fightingmom

Here is a link to the facebook page for the protest. Any of you that are local, please, please join us. Email, fb and call all local media, government officials, anyone you can think of. https://www.facebook.com/events/125271334288337/

Hey guys, I know it's been a while since I posted but I wanted to let you know that we are in the process of organizing a rally/protest outside of the Boston Children's Hospital in support of the Wray's and to spread awareness for PANDAS/PANS. This will be an organized rally with professional signage that Lynn (PRN -- and Laurensmom on this forum, I think) is having printed and we will have printed literature and educational materials to offer anyone that will take it from us! The TENTATIVE date is next Thursday from 8am-3pm --HOWEVER, this depends on if we get the permit on time. We may have some media coverage as well. It's looking very likely that we will. If any of you are in New England and would be interested in coming down - PLEASE DO. Let's be heard AND seen for our children!! Hope everyone is well!

That was interesting. I had to read it again today to wrap my head around all of it. Makes a lot of sense though. Thank you. That's very interesting. Do you believe your daughters lyme is congenital? just curious. It was your daughter that did the culture test and was positive, right? possibly, or we both got it at the time of her tick bite- i cant remember if i used my fingers to remove it. but she's had off/on issues since 18 months and then things went haywire after the tick bite. i was positive on the igenex wb dec 2010. just ran neuroscience lyme immune id on myself last week but dont have the results back yet. Yes, my daughter cultured positive with advanced lab in december, a year after lyme treatment, 5 years after tick bite. Of course, she could have been reinfected - who knows. Hey, now did your neuroscience labs come back?

That was interesting. I had to read it again today to wrap my head around all of it. Makes a lot of sense though. Thank you. That's very interesting. Do you believe your daughters lyme is congenital? just curious. It was your daughter that did the culture test and was positive, right?

figured I'd tack on here since my results were posted on the first page. Got my SON'S Igenex results: IgM **41 + **83/93 + IgG **41+ Not quite as 'impressive' as my results, but 83/93 seems to be a significant band particularly in late stage lyme - which coincides with my congenital theory. Bartonella tests were negative all around, I did the FISH and the IgM/IgG -- what a waste. I still think he has it. Do any of you know why the description for band 83/93 says it's the specific "antigen" for the lyme bacterium? Other sites describe it as the DNA for Bb. Are the other bands not testing for the same thing? Noticed the wording is very different for this band. Oh, and his CD57 was also 20. WBC 3.6 LOW (Range 4.0-9.1) Neutrophils 38 LOW (Range 40-70) Lymphs 50 HIGH (Range 20-47) Neutrophils (Absolute) 1.4 LOW (Range 1.5-5.6) Not out of range, but worth noting: Monocytes 10 (Range 3-10) Hope everyone is doing well. I've been quiet lately, treatment is kicking my butt.

Stoneybrook still does testing? For some reason I didn't think they did. Do you have a link to their lab. I'd love to see if they take United for my husband. I am about to submit bills for my son and I from Igenex to UHC PPO. I'll post back if they pay.

Hi there. Sorry I had not responded to this, I did read it a few weeks ago and meant to come back to reply, but I have been so tired lately, I just didn't. No excuses. I'm sorry for not replying when you took the time to respond, though. Thank you. Yes, our next appt is via phone and we have had meds called into the pharmacy already. So, that is nice. At least we won't have to travel for another month or two to MD again at least. Have another appt. with Dr. B. in CT for PANDAS stuff in a few weeks, but that seems like nothing compared to that Maryland trip. I am finishing up my last pre-req to apply to nursing school, but application period is in August for Spring semester. So, in about 4 weeks when I finish up microbiology I will be on a break from school until January 2013. Hopefully by then, I will have made some progress. I've worked so hard not to pursue this, and I've waited so long to go back to school, I'm not giving it up. I like your notebook idea and separate cabinets for meds. I need to get more organized in that regard. My son has been having issues with meds, too. Throwing up at school and his esophagus is bothering him so swallowing is an issue now. More labs from him came back abnormal. WBC's all out of whack. His CD57 also came back as a 20 -- same as mine, which is weird to me. Waiting on his Igenex results. I am getting swollen and painful veins now. In my arm and my foot I literally have round lumps over my veins and it's extremely painful. Of course, I am blown off about it. Was told perhaps I have a tendon injury in my foot. Idiots. My husband is next in line to be tested for Lyme. Trying to give it a month or so, this is getting so damned expensive. YES, my husband explains a constant pain in the back of his eye, accompanied by some stabbing pains that come shooting in out of no where. I don't like to mess around with eye stuff, you never know would could lead to permanent damage. I'm way more concerned with his eye at this point, than my heart. Interesting that the heart issues are seemingly a common product with lyme and co. and you also have mycoP and had eye issues. We have an appt. with the opthamologist at 11am now. I'm trying to figure out if I send husband down the lyme road right now and spend even more money we can't afford on testing and more doctors, or just treat the eye and mycoP and see how it goes. I'm starting to truly question the idea of possible sexual transmission of all this stuff. Just saw your post on eye pain. I had that too and it was scary. That is when I went to the immunologist and had the Western Blot done and discovered that I am +. I have taken about 2 months of Doxy and my eye symptoms are better. I went to a Dr for my eyes and he didn't "get" the Lyme thing at all. It was almost like seeing a Dr who does not believe in Pandas. It was pretty upsetting. I can imagine that would be extremely upsetting. How are your eyes doing now? My husband is doing better, still on Levaquin for MycoP though, and I wonder if that was helping more than the drops. I strongly suspect it's the mycoP or possibly Lyme (he hasn't been tested yet) causing his eye issues. This crap is so freaking exhausting. I was always that one of my friends and family that touted about organics and BPA's in plastics and recycling, etc. -- I even am careful not to over-vaccinate my pets and feed them grain free, organic or raw foods. It just makes me so mad. I feel like I "do all the right things" and still my family gets sick...but the people down the street eating fast food all day are fine, ya know? That was my little "it's not fair" cry - I'm over it for now, but deep down, it does really get to me.

Circulation problem? Could the EPO influence that? I don't know what EPO is.

Yes, my son went from honors classes and all a/b's to agonizing for HOURS over a few algebra problems that he had already known and been able to do. We had to have him removed from his honors math class because of it. He said he didn't know why, it was just too hard and his brain didn't know how to do it anymore.

Yes, thank you to everyone willing to share. It's very helpful to hear both sides of the coin and your personal experiences. Nancy, thanks so much for the very informative reply. We have a lot of similar symptoms here -- both in your daughter/my son and in yours/mine. I believe I have had Lyme for longer than my son has been alive and if he has it I believe he contracted it congenitally as well. We are doing our labs on Monday and I'll post the results when we get them. For right now, I am positive for Lyme, have clinical dx and rash for bartonella and high mycoP titers (my husband's mycoP is extremely high, both IgM and IgG -- I think he needs to be tested for Lyme, too at this point -- and that opens a whole other set of suspicions as he was healthy as a horse until about a year ago and I can't help but wonder if he contracted lyme from me). Please continue posting if there is more to add. Thanks again to all of you. P.S. Is Dr. B's IVIG protocol HD or LD? If I remembering correctly it used to be LD, but has he changed it?

I have seen this in my son a few times. They may be slightly dilated at times but a few times extremely dilated and it's a but freaky.

Yes, thank you so much!! You seem to have a lot of ties to many doctors. Do you work in the medical field?

Very helpful, yes. Thank you! 70% is a big gain for a 17 year old 8 weeks post IVIG. I'm surprised by Swedo's response, too. Glad you crashed the conference. Anything else you learned there that would be worth sharing? We don't have tics either. I really hope the relief lasts. If anything, at least you have confirmation now! Good for you for persisting on! I too feel like we wasted so many years.

Interesting about the PEX. How long have you had the positive results? If you don't mind my asking, how much does that cost? I thought I read in the neighborhood of $30-45k?

Congratulations on the approval.

Here's the weirdest thing. My husband and I have extremely high mycoP titers --- Dr. B. told me yesterday that my husband's were the 2nd highest he ever remembers seeing! We were convinced it had to be triggering my son. Last weeks labs - which we got back yesterday reveal no antibodies to mycoP. Or atleast at levels considered negative. What the? Really? He's seriously not affected, or is his immune system so wonky, he's not making the antibody?

He's too old. See...now the miraculous change -- that's what I want to hear more of! Remind me, how long has it been? Do you also know what the dosage was?

Thanks, I have experimented with NAC and Omega and other supplements over the past 2 years -- have seen improvement with zinc. I have been researching methylation and we are testing on Monday for MTHFR along with the Igenex, CD57 and some others that will hopefully give us more clues as to other issues. I'm hesitant to pursue IVIG in general -- only because if it makes him worse he will for sure wind up in a psych hospital. He's 14 - he's growing - in flares he can get violent and it would be detrimental to our family if we wind up there again. Though....I can feel the explosion coming away again...so...I'm stuck...do nothing and watch it come anyway, or take a chance and see? I feel that IF we are going to do it, rather sooner than later. And, what we are doing isn't working -- for a few weeks it does, but then we fall again. And, I also am realizing how significant strep has been in the process all along. I knew it was an issue, but didn't realize until compiling more previous history and seeing yet more lab results with positive ASO (and that correlate with symptoms) how much of an issue it is. He is currently on 500 mg of Zith daily AND 875 mg 2x a day of Augmentin...still strep is an issue. I'm most concerned with the possibility of Lyme complicating things when it comes to IVIG. I think if his Igenex comes back negative, I'll feel stronger one way or the other. I feel a sense of urgency trying to make some headway before he heads into high school at beginning of September. We barely skimmed through this last year of middle school -- coming from a honors classes and straight A's. And, He WANTS to be there again. So, I feel as if this summer we need to make some major headway and have the opportunity to before going back to school, so I'm a little hot on the trail...which trail that is...is the bigger question. As you stated, some kids do great for even several months and then symptoms return. I guess I'm trying to gauge if that's the status quo. It seems to be from what I can gather -- and if that's all it's giving us, is a few weeks to months, is there another benefit I am missing as to why we still do it? Is there a long term gain from it? That's what I am trying to figure out.

I'm having some serious internal struggle right now. I will summarize my thoughts. I strongly suspect lyme in my son, and we are doing Igenex testing on Monday -- if that's positive -- well I have more pondering to do. I have Lyme -- my Igenex came back very positive and I have been sick longer than my son has been alive. Thus, the reason for it being on my mind and also because of symptoms. However, symptoms can be similar to PANDAS. My reason for bringing this up is because IVIG already seems like a mixed bag from what I can see, but tossing lyme into the realm of possibilities makes it even more so. My son responded AMAZING to steroids (actually he was a basketcase for 5 days during -- but amazing for 10 days afterwards). Then we came crashing with a big boom after they wore off. Antibiotics seem helpful at first and then we plateau somewhere around 2 weeks and then hit a rough patch by week 3-4. I was trying to find a lyme cycle in this, which there may also be. However, I'm piecing together labs since December and then starting to get old labs/reports/charts from old docs and hospitals and I'm noticing that with absolute certainty strep has been an ongoing issue. My son has low IgG (below range) and borderline low on a few subclasses. He failed strep. pn titers, but I'm not sure how much weight I give those as far as diagnsosis - though I understand it's a good ball to have in my court for IVIG. We went down the psych road for nearly 2 years. Therapist, psychologist, psychiatrist, meds, even brief hospitalization and outpatient program thereafter. Nothing worked, meds made him WAY worse, except abilify at a very, very low dose that I was told I was seeing a "placebo" effect. He has non-classic OCD symptoms, with things like food, his room, nobody can touch his things, if i pick something up off his floor it sets him off, only certain foods for breakfast, certain things for lunch, hoarding of food, etc. -- this all resolved for nearly a month when starting zithromax. Food issues are still holding much better -- son even said he doesn't have the urge to binge or sneak food anymore which was a big issue. School work deteriorated to the point of honors class to d/f over period of weeks. After steroids and at beginning of zith treatment he caught up on missed assignements and handwriting greatly improved. This is waxing and waning now. One minute he is gung-ho about getting work done the next it's a war to get him to open his backpack and even attempt to do any homework. He is also rage-y at times and beligerent -- which makes me lean more toward lyme/bartonella stuff. Would love feedback from PANDAS/PANS not related to lyme if you have experience on that. bottom line is...steroids/decrease in inflammation and ibuprofen have been hugely successful. Zithromax which is also anti-inflammatory has been very, very helpful (discontinued all ibuprofen while on it) but the strep keeps coming back (on augmentin and zith now), even the damn dog has strep now and he clearly has immune issues along with it. I hadn't really wanted to jump into IVIG - despite the fact he has two PANDAS cousins that responded well. I'm particularly worried that is Lyme is a factor it may send him overboard. Though, I'm having a major internal struggle with the fact that he's 14 and I don't want to miss the boat on this if it could possibly help. The thing is, I see so many families have tried it and they are still here, still posting and not better. So, is it actually helping? I know this topic can be heated, please - I am not looking for a fight, I'm genuinely on the fence with what to do and trying to weigh all possibilities and thoughts with how to help my son? Can we talk truthfully about if this is helping, and what your experiences have been and your thoughts on what you would do in my situation?

I have found relief with organic coconut oil. Works wonders -- just not always convenient in places like the scalp. Though I have been known to slather it on for an hour or so and then wash off.

I don't think you are crazy. I think you need to do what works for your family. I also think that none of us know our kids and our family better than we do. We are all on wild ride trying to decide the next course of action and it's an emotional roller coaster. Steroids scare me with lyme in the picture. I've been on them several times this year and it may be why my explosion of symptoms recently. Who knows? That's the sucky part, we really don't know -- with any of it. congratulations on your approval. I hope it really helps. I really do.

Chemar, Just want to be sure I didn't play a role in this. My response would have fallen into the "less than enthusiastic" camp since Zithromax worked quickly to help my son and has eliminated the need for ibuprofen -- for a while at least. We'll falling again, quickly... Had nothing to do with the messenger - or the message -- just disappointment in the fact that many of us have dealt with resistance with regards to getting abx prescriptions and some docs will use this as another reason to deny...

You know, I'm starting to feel this is not going to be maintained by abx with us as well. We are now starting Omnicef today -- Zith and Augmentin worked for a bit, but Augmentin is bothering my son's stomach and he has elevated strep titers again, even ASO this time. Dog has strep. Husband has ASO on border at 200 -- everyone has strep - it's really pissing me off. I am extremely nervous about prospect of IVIG - as our family will truly not survive if things get worse with my son and I am Lyme + -- so I suspect he is, too...which makes it more nerve wracking -- but I'm still starting to think we may miss the boat if we don't try it soon since he's already 14. Kimflow, I feel you. I feel like we are riding this together - gains for a few weeks and then failure to respond and strep popping up all over the place. For us steroids were a crying emotional nightmare for the 5 days he was one them ---- but my son was literally an ANGEL for the 10 days that followed. Happy, laughing, helpful, doing school work, even catching up on all assignments missed. Asking me how my day was, offering to ride his bike to get me coffee...I mean a REAL sweet, loveable, nice kid. The kid he used to be. Sadly, it didn't last long.

Very well stated.

Does she have a Dr. open to the possibility of lyme? Any doc can sign off on the test. She doesn't need to see an LLMD in order to get it done. She can call Igenex to have them send her the kit and just needs the doc to sign off on the order. EDIT: Sorry, I seriously don't know how I missed the part about how you clearly stated none of her docs will take on possibility of Lyme. Try mdjunction. Post there in lyme forum asking for LLMD. They will email you a list of docs.