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Everything posted by h_lee4

  1. I'm looking into getting on a better probiotic (the one I'm currently on is not very strong) but I have a couple of questions: I want to get a pandas/pans friendly probiotic and I have read that it is important to avoid strains of streptococcus... does this include all strains? One of the probiotics I was looking into only contains one streptococcus strain and it is streptococcus thermophilus... not sure if this is okay? Is there anything else I should know about probiotics and choosing the right one? I have been sensitive to previous probiotics in the past but I seem to be much less sensitive and fragile to supplements and meds now so I'm hoping I won't have any trouble! Thanks in advance.
  2. I think it ultimately depends on the doctor. But I believe that one could be diagnosed for being just below normal. I do not know if PANS can screw with the numbers but I do know that the numbers are changing and fluctuating daily. Are you hoping for a diagnosis? If you believe a deficiency may be an issue I think the doctor would be open to addressing that due to the on going infections alone. You don't want to make a problem if there isn't one, but I can tell you low igg surely would not be helping with the infections and treatment would hopefully help! The normal range is still a range and just because one is within range doesn't mean that they are equal to someone who is also in range with a much higher value. Both are normal but they aren't equal and the low one might not be sufficient. I've always looked at it like every little igg counts. This is a reason that some people don't like IVIG and prefer other methods such as Sub Q, IVIG loads you with a big amount of igg but as the month goes on the level falls and right before the next infusion you find yourself on the low end of the range. You stay in range, but there is a noticeable fluctuation. Whereas Sub Q for example is weekly so you are able to maintain that level at a steady, stable, median level within the range. Igg levels are always fluctuating so if someone happened to be just below the normal range one day this wouldn't necessarily be a cause for concern. However, if someone tends to live at that low level outside of the range then treatment might be key to help that person maintain enough igg to live a healthier, more infection-free life. Doctor's also definitely take the patient's ability to fight/prevent getting infection into account.. for me the diagnosis came from a combo of low levels of igg and my chronic sinus infections that I could never seem to fight off. It sounds like the on going ear and sinus infections would be a big factor in a potentially getting this diagnosis. I was also low in SubClass 1, not crazy low, just under the range I believe, but I was pretty low on the IGG total. At the end of the day there are people that naturally sit on the low end of the scale and do not receive treatment, it just depends if your comfortable living at that low end. I think its a question for an immunologist since its always good to be on the safe side. I think they would have very valuable input. My immunologist has always felt very strongly that I need treatment and so it never fell on me to decide wether or not I feel I really need it, I don't like to make those decisions anyway! I also want to note that I have seen different normal ranges on different tests that different doctors have used so keep this is mind.
  3. Hello, I haven't been on this forum in a while and I have been spending time focusing on treating Lyme and co infections. I have a very complicated health history as I have Lyme disease, bartonella, mycoplasma, toxic mold (highest levels my doctor has ever seen), PANS, specific antibody deficient (immunodeficiency of IgG). I have many symptoms and I have a very hard time figuring out which symptoms are from what as most of the symptoms from all of these diseases/infections overlap. One of my worst symptoms is insomnia and irregular sleep/circadian rhythm, can't fall asleep until 4-7am and thats with xanax. I treated my Lyme disease at a treatment center that uses integrative medicine, I am now post-treatment waiting to see if the treatment was successful, although I'm not sure how well I'll be able to tell while still dealing with other ailments. Anyway, while I was at the treatment center part of the treatment was a shot in the arm, the main purpose of the shot was complicated but the shot did contain B12. While I was on this shot my sleep regulated, I was able to fall asleep on my own without xanax or anything else by 10/11pm every night and I was able to wake up at 6:30am successfully every morning without feeling like death. Not only was my sleep improved but I felt better overall, I was much more calm and happy, had less anxiety and much better stamina and energy throughout the day. I wasn't able to stay on the shot for the whole treatment time however because I started bruising badly from it, at the same time I stopped the shot the treatment started getting intense and my sleep and other symptoms got worse. I didn't make the association between the B12 and my improvement until I got home. There was so much going on and so many other factors that I wasn't able to identify what exactly was making me feel better, I thought it was just a combo of everything. But now I have had a chance to look back and I realize that my improvement was due to me finally giving my body something it desperately needed (I assume) and when I stopped, my symptoms returned. I feel confident that the B12 was helping me and I am wondering if anyone has heard of B12 providing relief or has any knowledge or advice on the topic? I also think that the improvement and relief while on the B12 should be able to tell me which ailment(s) are causing the symptom set I have described. I have read something about the MTHFR gene mutation and needing B12, I have not been tested for the mutation but I believe that I have it. I am also struggling with adrenal fatigue currently. I have started taking sublingual MB12 tablets but haven't noticed any effects from it yet. Thank you so much in advance to anyone who has any knowledge on this topic, I thought I would post on this forum since the members have so much knowledge about everything!
  4. Hello, I was diagnosed with a specific antibody deficiency (IgG) when I was 13, about five and a half years ago. Have been on IgG infusions ever since. Started out by doing Sub Q weekly but later switched to IVIG once a month. I started learning about PANDAS/PANS about a year ago after my health took a rapid decline, but I believe I have had soft symptoms since I was about 13. I also have Lyme disease. I'm not sure if this is helpful, I am still trying to figure out how this all ties together.. If you have any insight regarding the combo of immune deficiency and PANS/PANDAS please let me know! Also, just a note. I used to do fine after my IVIG infusions, only effect was exhaustion right after and maybe a headache the next day, however, after my health took a serious decline and my PANS became full blown, I started having adverse responses to the treatments with severe PANS symptoms the day after IVIG. I believe I have an infection that is triggering the PANS and hopefully once I get rid of it I won't have these bad responses to IVIG anymore! I also believe that my IVIG may have been a factor in keeping PANS in control all of those years.. possibly.
  5. Hello, I hope your son is doing better! I'm sorry I don't have an answer to your question but I am curious about the improvement on the MB12 shots. What made you start doing the shots? Do you still do them and do they still work or was this only a temporary fix? I have been looking into MB12 a lot lately and am very intrigued that the MB12 shots helped.
  6. Hello, I am new to this forum and need some help! I am 19 years old and was diagnosed with PANDAS this past July. I was also diagnosed with Lyme Disease through IGeneX testing a few weeks ago. I had a lot of infections that were causing my PANDAS to flare and it took all summer and into fall to get rid of them. Now that they are gone my PANDAS symptoms have been SO much better, I basically thought my PANDAS was gone although I am still waiting to do an IVIG treatment. I started a Lyme treatment about a week and a half ago, the treatment consists of two antibiotics, doxy and ceftin. The last few nights my PANDAS symptoms have been coming back in full force (extreme rage, strange dialects, OCD, and basically I turn into a whole different person) its awful, as I'm sure most of you know. But I am so scared because I thought my PANDAS was gone. I have made plans to return back to my normal life and go back to school because my doctor said I would be better and ready to return. My doctor said my PANDAS would be under control. Now I am terrified that my PANDAS won't be under control by then, because like I said, I thought it was better and this really surprised me. I am doing an IVIG treatment next week to reboot my immune system and hopefully get rid of my PANDAS. But I am afraid that it will not work and how will I even know if it worked or not? Do I just have to wait and see if I have another PANDAS episode because if so that is a very risky way to live. What if I was back at college and PANDAS just suddenly came back like it did this time? That would absolutely be the worst. Like I said I was/am on antibiotics for my Lyme and they could be what caused the PANDAS symptoms to return. But I don't understand why they would cause the symptoms to return? The die-off from my Lyme already causes a herxheimer reaction, could it be causing PANDAS symptoms to flare as well? Another important thing to note is that my flares were not full-on PANDAS until last night. Last night was full-on scary symptoms and yesterday I started taking Nystatin for all of the yeast in my system. Maybe this contributed to the PANDAS as well? Any help would be much appreciated! I'm just freaked out because I thought my PANDAS was mostly gone and I don't know why it came back or how I can prevent it from returning in the future. I hope my IVIG treatment works, I don't know what I'll do if it doesn't. I need to get this under control so I can comfortably and confidently go back to living my life!
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