fightingmom

Boy can I share those sentiments! I spent years on seizure meds I did not need (for my syncope episodes) and have been sick with the most random and various illnesses and symptoms over the years. Not once has a single doctor EVER suggested I get tested for Lyme until I took my son to see Dr. B. in CT. So thankful now, but man it sucks to have suffered so long.

This is an AWESOME question. I think for a lot of kids, part of the problem is they can't kick the infection in the current state of their immune system. However, I have been wondering myself how effective it would be say, if there are other issues, i.e. methylation, lyme, vitamin deficiencies, etc. I am thinking that for us, IVIG will be what we aim for after we sort out all the other things we can - try to get my son as healthy as possible from all other angles and then shoot for IVIG if we still need it.

Thanks very much. I had abdominal surgery twice in the 7 months prior to this rash, had been sick over the summer with stubborn sinus infections and had been given steroids, then got 4 or 5 vaccines in one day for school. I think my immune system was probably very bogged down. Additionally, I developed several other blistering rashes and hive like rashes over the next few months and was given steroids for each of them by the ER. I have since learned that steroids are contraindicated in Lyme. I was on them for 22 day between Feb-March and have been so sick for about four weeks since then. Exhausted, aches and pains and just don't even want to move sometimes. Even eating seems to be a chore some days.

Okay...little history...recently tested positive for Band 34 on WB. Also, high titers for mycoplasma and low titers for a few coinfections. I have been sick with various illnesses for over 15 years: fainting, dizzy spells, aching, rashes, female problems, headaches, gallbladder removed, many surgeries, blurry vision, eye floaters, neck pain, back pain, tremors, muscle spasms, bladder issues, twitches, new allergies, and there is a ton more. I started school again this past fall. At the end of August I found out my I did not have antibodies for all of my childhood vaccines and had to get them all over again to meet the school requirements. I feel as though they greatly screwed with my immune system and I have been on a downward slide ever since. Well, back in September (about 2 weeks after the vaccines) I developed this rash on my leg. I wasn't sure what it was so I started putting cortisone and antifungal creams on it, which made it way worse and I wound up on antibotics (Bactrim -- which made me SO sick and caused me to break out into a blistering rash) because the doctor thought it may be infected. That's not reflected in these pics, it got really bad. I think I was so paranoid about whatever it was and if it was contagious that I irritated it by all the crap I was putting on it. In hindsight, I can't help but wonder if maybe it was the bulls eye rash...perhaps my immune system was bogged down with vaccines, etc. and it awakened something lymey? Who knows...maybe it's not a lyme rash at all, and it's just something creepy to add to my mystery symptoms collection. It started out small about the size of a quarter and grew to over 3 inches in a period of a week or two. The image on the right is what it looked like at first, on the left is how big it grew. It is kind of shiny in the pic on the left because I had slathered it in some sort of cream like an idiot. So...this is my long winded way of asking...Does this look like a lyme rash? And, if so, I am fairly certain this may be the reason for my illnesses over the last 15-20 years - so why would the rash pop up after all this time, doesn't it only show up early on? http://i1158.photobucket.com/albums/p616/fightingpics/rashes/RashLeg.jpg

We noticed this type of stuff early in the game for my son. It was all so mild, I considered them quirky behaviors and nothing that was really alarming. Had I known then what I known now, my son would have gotten the help he needed long ago. Keep that appt. with Dr. B. - he will run a ton of titers/labs even for some viruses. Even if the titers are within normal range, if they are higher than where they were before that would be a good indication that there was more strep exposure. Viruses can trigger, too...and you may not find any proof in labs, but I think you are on the right path. Could you do me a favor and PM me the name of the docs you saw at Mass General? I'm exploring some neuros for my son and we are in Providence. The closest would be MA for us and I don't want to get stuck with any of the anti PANDAS docs there.

You never know. The best way to know is to have allergy testing done. My son and I both clear our throats a lot, and we both have dry coughs. Neither of us tested positive for an allergy to our pets, or anything except for dust mites. Ironically, every time I have brought in a new cat I always get allergy symptoms for a little while. I don't know if it I just build up a tolerance for our own cats or what, but with each new one (and I have foster litters, etc.) I can get itchy eyes, etc. but then after a few weeks it goes away. Strange. For now, I would keep the cat out of her room if possible, definitely don't let the cat sleep with her and make sure to vacuum daily, etc.

I live in RI. We have an appt to see Dr. Beals in May. There are some good ones in CT, but one has a list out as far as December and Dr. J is pediatric only, and I'm not sure how accurate this is but I read initial consult was $1000 before labs. Couldn't do that right now, we are both sick and I just got $4k in hospital bills the last few months.

I actually did email him with a link to the photos on Friday night. Though, then I saw that his fee $400 per 15 minutes....I definitely can't afford that. I can't imagine getting out of there with anything less than 30 minutes, probably more like 60. We are already headed to a LLMD out of pocket on the 11th and a 14 hour round trip drive for that. Haven't thought about Dr. L. - I'm sure it would be similar, but I'll look into it. Thanks.

Thanks to both of you. The purpose of the research study was for them to see how the brains of children with OCD, ADHD, Anxiety or Bipolar work while they are doing certain things. This was a fMRI and my son was playing special games through part of the MRI. They were monitoring how his brain worked during certain activities of the games. In betwee game sessions (he played the games 6 times) they took several rounds of images. They also took a DNA sample (but we don't get results of that either) and he did an IQ test the last appt (scored pretty high too and that was on a really bad day, he was mid exacerbation, I wonder what he'd score on a good day, but anyway, that's off topic). The only thing they promised us was the images and my son got paid a little over $100 (which I did not know was the case until we arrived at the first appt - but he was excited about that). The CD is actually pretty cool it has a viewing software that allows me to not just look at each individual shot, but I can basically watch as the machine rolled around his brain in motion. It's very cool. We do not have a neuro at the present time. However, about a month ago I emailed with one in Boston. I have been trying to carefully select doctors that are PANDAS friendly and I found his name in the list of speakers at an Autism convention, but he was actually there to speak of PANDAS. I emailed him from his hospital page and he had responded to me, but a little brief as he was out of town. He asked me a few questions which I did respond to, but then never heard back a second time. I emailed him last night the image and am hoping he will respond. I am happy to pay for the appt. I just want someone that won't dismiss me when I get there.

I agree- your son's looks even larger and more inflamed than the one in the article?? Edema in the brain anywhere would be an anomaly- I think you are on to something. Keep us posted on report! Thanks, I have two emails out to neuros. Will let you know what I find. Whoa, I would think ethically, they'd have to tell you if there is something wrong. The issue is the MRI was done by a the psychologist running the research study. He did not say anything to me about the edema thing, I overheard him. I specifically asked him if he saw anything worth noting on the MRI and his reply was carefully worded "from a psychologist perspective there was nothing that jumped out at me, but we don't have a radiologist or neurologist here for our purposes." I have bumped heads with this doc during the few prior visits for this study. He suggested at the first appt my son may be bipolar and when I told him I was convinced of inflammation being an issue he dismissed me. A few weeks ago I told him I disagreed with his bipolar assumption, but he could place him anywhere he wanted as it was his study. He condescendingly asked me what I thought since I "seemed to do a lot of reading" (a$$hole) - so I again told him there was a huge inflammatory component as his behavior changed significantly on advil and steroids. He gave me a blank stare, did not acknowledge what I said, he moved on to something else. So, since I already made it very clear I felt he was wrong and there was an inflammation component to all of this, I don't think there is a shot in h-e-double hockey sticks he was going to say a word to me that made him look wrong. So, here I sit with some really great shots of my sons brain from all three planes, sagital, coronal and transverse and no where to go with them. I think I'm going to have to find a neuro that believes in PANDAS/PANS (that should be fun -- we are going down the lyme path, too as I have positive band 34 and mycoplasma so I need to find a doc who will take insurance and I guess order another MRI or maybe PET). I truly think this is revealing though and wish I could just get someone to peak at it and say YES this means something let's explore further, or not.

Thanks so much for sharing this. I am going to email and thank the Dr. (if I can find an email) and the magazine for the article. I think as much as we try to advocate and spread awareness, it is equally as important to thank those that have helped in this regard. They may also be more prone to do more stories or dive further in.

Wow!! Amazing you ate traveling from Sweden!

I already forwarded this to the school principal, teachers and requested that they share with the school psychologist. I also recommended that they notify parents in the event that they see a sudden decline in school performance, NEW ADHD like behaviors, motor or vocal tics, or any other behavior that is out of character for the child. This is a middle school, my son will be out of this school in 2 months, but hopefully they will be aware for other children in the future.

That's strange. It's working for me just fine. I don't see it's posted anywhere else at this point, but I believe they are working on that.

Just looked up the Periobiotic toothpaste. Probiotics in toothpaste? Very cool!

Argh, I think my biotene toothpaste has flouride. Darn it. It has xylitol, lactoferrin, and other great enzymes for bacteria in the mouth. I hate to say goodbye to it. Has anyone tried this one? http://www.amazon.com/Xyliwhite-Non-Fluoride-Toothpaste-6-40-Ounces/dp/B000MGWIE8

YEP, that's what mine is showing. IgM neg, but IgG > 5.0 --- and I can tell you I feel like death at times, but other days okay. I think it affects everyone differently and some can be asymptomatic. I have often been asymptomatic for strep. Despite my son not showing elevated titers, I can't help but wonder if he's battling my infection, too. He has low total IgG so I question his ability to properly build antibodies in the first place and believe many of his titers are low or negative because of it. Keep an eye on this mycoP thing!

This broke my heart. I agree with LLM, reassure her...and keep coming here when you need to get it off your chest.

Kimballot, that's a good point about before and after. I have been comparing patients of same sex and age online (and thought the linked one above was a 15 yo boy, but maybe not) and haven't seen anything that looks like my sons though, but it still may not mean anything. The edema comment was alarming though. There is no MRI report. This was a research study, there was no radiologist and their purposes were different.

That article was very helpful. Learned a lot. Thanks!

Try this link: http://s1158.photobucket.com/albums/p616/fightingpics/?start=all

Nancy, that's my fault, I chopped it to show just the part in the image on the link I posted. I am going to make a photobucket account real quick,so I can upload more pics and then post them here.

Hope it works!!!

Oh and while he wouldn't say anything to me, I overhead the Dr. talking to a girl in training about my son's images and he was pointing out to her "areas of edema" on his screen. I tried not to let him know I was listening, but I was...I wonder if edema is always bad, or if everyone has some swelling?

Sounds interesting!