fightingmom

Hmmm, interesting as well. My son never swabs positive either, though Dr. B. thinks strep is in the sinuses. His sinus infections absolutely correspond with the time that his titers went up between Dec - March. I went and googled the antibiotics/titers thing and it seems that being on antibiotics or steroids can cause titers not to elevate, so perhaps that's the reason for the consistent shift downward after taking them so long?

Dr. B. ordered CBC in March, but the doctor that order the titers and the lipids panel in December didn't order CBC. Very strange right? My son's total cholesterol was okay, too. Just triglycerides. What the heck could be doing that? And, that's a big jump for one month!! What the heck!Do you think it corresponds with strep? Or has to do with lyme?

I have a few things on my mind that I want to check on, but I'm sure I'm missing key players in all of this. I suspect inflammation is a huge player in my son's problems (and I know it is in mine all pathology reports from multiple surgeries list "Chronic inflammation" on all tissue specimens). Have there been any tests in particular that were helpful for you and/or your kids? Any suggestions would be appreciated. Also, have any of you found elevated cholesterol related to Lyme? My good chol is low, bad is high and my son's triglycerides are 258! on a range of 1-149! We eat very little meat, no transfats or hydrogenated foods, mostly fresh and organic foods...so I can't figure out why this would be. Thanks!

I can't find the article I read about the vascular issue, but came across this thread and I think it may help you: http://www.latitudes.org/forums/index.php?showtopic=13599

Has your DS been on antibiotics since the major explosion 2 1/2 years ago? If so, maybe that was bringing titers down, despite exposure and infection? Just a thought? I have no idea, lol

Pretty sure I recall reading that Lyme is able to cause inflammation or disorders of the actual blood vessels. I'll see if I can find that.

Wish I could help you figure that out. I have zero faith in my ability to interpret the rules of antibodies. I am acing difficult classes like Human Anatomy & Human Physiology, yet I can not wrap my head around this concept. There seems to be exception to every rule once I think I have it all figured out.

Do you think it is a reaction to the medication? Was she on meds during the previous episodes?

Just gave him his first dose. We shall see what happens, any change makes me nervous! This is what mine has: vitamin D3....................................................................................... 200 i.u. vitamin K1 ................................................................................... 500 mcg. vitamin K2 (MK-4)............................................................................... 1 mg. vitamin K2 (MK-7) (derived naturally from natto)†........................... 45 mcg. http://organicpharmacy.org/products/Synergy.K/SKU:PE00949

Interesting, that's how mine were, but sometimes lots of blinking like I described. Have been on numerous antibiotics over the years for sinus/ear infections, etc. - but coincidentally had been on them long term for about 4 months during exploration for stomach issues (which turned out to be gallbladder issues) and that's around the time these staring fainting/seizure like episodes stopped. Might be on to something there, NancyD!

Thanks for this! I have positive IgG >5.0 with >1.10 being positive --- and husband just tested positive IgM - very high Dr. B's office said, but I forgot to ask numbers. They are treating him with Zithromax, but not me and I feel this is a big mistake. They also feel strongly that my son is reacting to my husbands mycoP because he is responding so well to Zithromax. I personally feel that treating both of them and ignoring me is going to prove to be a waste of time and ineffective.

Thanks! I'm going to search for it now, too.

Thanks! This was helpful! I already use those types of products on my dog and even the cats despite the fact that they are inside only. We do not allow the dog on furniture, and you have just assured me I am not paranoid by wanting to have the yard sprayed. I may look into my natural or less toxic options, but I am going to make sure the yard is safer for us this summer and when taking the dog out.

It seems to only be available to the public as the abstract. I am going to see if I can purchase it somewhere. If I do, I'll let you know.

I am so sorry you are going through this. In my early teens and late twenties I went through similar episodes myself. I also had significant fainting episodes and often wound up leaving public places (work, shopping malls, etc) on a stretcher (horribly embarrassing and scary). Many times before I would pass out I would fall into staring spells - as if I was in a trance. I could hear people but had an extremely hard time responding to them. I wanted to tell them I could hear them but often would stare into space and no words would come out. I also would be confused afterwards. Excessive blinking was part of it. Have you ever eaten something really tart and had your eyes wince up and blink really fast? That's what it felt like. I was put on seizure meds for almost 5 years. Tried tegreyol, depakote and Dilantin. They really didn't do anything to help. During this time, I started showing a host of physical health symptoms and a primary care doc weaned me off the meds. I felt like I was alive again. The year or two on depakote was terrible. I gained weight, my hair was thinnin and coming out like mad and I felt like I missed an entire year of my life. I don't remember it at all. My husband has been noticing my blinking again and I have been feeling this fluttering feeling in my eyes. Hope it's a fluke! I'm telling you all of this because I truly wonder now if it has a tie to what is going in with my son and your description of your dd sounds similar to ehat i experienced. My EEG's were mostly normal, lots of twitchy movements during sleep study and MRI was normal, but this was far from normal, I assure you!! I am now showing high titers to mycoP, which I read your body never gets rid of us this true? Also, pretty positive I'm battling Lyme disease an believe this to be to blame for my problems for many, many years. But, I always have battled sinus infections, ear infections and strep as a child, teen and even into adulthood. Makes you wonder! I have been surprised that I have not read about more "seizure" activity with PANDAS kids. in theory you'd think they would be very likely to experience seizures. High fevers can trigger seizure activity, encephalitis, brain trauma....our kids brains are being assaulted...seems like they would be more susceptible to neurons misfiring. I would challenge any neurologist that told my nicely I wa full of $git - that's for sure!

Double post

I have this too. Though it doesn't last all day it comes in waves and my husband will want to help me and I will mutter out not to touch me. It's happened a handful of times and lasted an hour or so. It feels like nerves to me. I'll be seemingly fine and then brought down to the floor with burning pain. I don't have PANDAS, but recently tested for Lyme. I would definitely look into it.

Shamelessly bumping my own post. Can anyone help me with this? In summary, I'm just trying to determine if this increase in titers suggests that he did have strep at some point between Dec. and March. It would help me gain a lot of perspective to know this.

I bought some, too. Just arrived today.

Start very slow and don't change anything else when you give it. I think my son is activated by NAC and that was at only 600mg.

New study shows it's being effectively used to reduce traumatic brain injury! http://www.spauldingrehab.org/news/newsdetails,id=1430

This is VERY helpful to me, because I have been convinced that dopamine levels are the major neurotransmitter issue for my son. May I ask, how long have you been on the Amandtadine and what type of doctor prescribed it for you? I'm headed down the path to methylation...which coincidentally the goals will involve reducing glutatmate and increasing production of dopamine to normal levels. I think this drug may be able to offer me some clues and maybe I can figure out what recepters its involved with and work my way backwards a bit.

I can see everyone's perspective on this. Everything that every single one of you has said has value. I think the problem here is that we are all stuck between a rock and a hard place and there is no good solution. We all have to go with our guts and do the best we can as parents to our children. Some days that may mean we do one thing, another day that may change -- circumstances may change the way we feel about the same situation tomorrow. All we can do is do our best and hope for the best possible outcome in the end. I have faith that all of our kids will get healed. I've never seen a more determined group of parents ready to do whatever it takes for their kids. We will get there.

Okay, strep titers are not something we normally did until the last few months. I don't really get them. From what I have read is that ASO starts to go up and usually peaks at about 3-4 weeks from start of infection and then drops down quickly. DNase B tends to show elevation if there was a recent infection, but usually not active anymore. Is that right? An increase in either indicates exposure? However, they should be monitored more closely in this case, like a few weeks apart...that's what I'm grasping, please correct me. On December 19th my son's results were as follows: ASO 69 DNase B 122 March 15th ASO different lab, no number given, just reads "negative" not sure if that means it's completely negative or if within a certain range they don't report the number. DNase B 273 Now, I know the 273 number isn't hugely elevated but it's more than double what it had been 3 months prior and he was sick during this time with sinus infections that we still haven't kicked. We started treatment for those in February - abx 10 days x2 prior to the testing in March. Not sure if it would make any impact. What I'm trying to understand is if there is any signficance in the increase? does it suggest he had strep some point within these 3 months, or no? If so, it's likely that Dr. B's assumption that strep is hiding out in our sinuses may be correct because the sinus infections seem to be the constant issue. thoughts? Oh and anyone have any clue as to why this doctor would check my son's cholesterol but nothing else? No CBC, just lipids panel? Triglycerides were VERY high. Range 0-149 and my sons were 258!! -- this was never even mentioned to me. ----JUST NOTICED MY TITLE HAS A TYPO. OOPS!

This is a really difficult question to answer. I do think that I would be extremely uncomfortable with 3 days camping as mentioned in another post. However, I really struggle with the fact that many of these kids are suffering internally and socially with the fact that they are "different". They hang in to the fact that they are sick, have to pop a milliOn pills a day, come home early to stay on medication schedules, or miss sleepovers because of meds or embarassing symptoms, deal with being sick physically and whether or not they ate going to tell or hide it from friends. They miss school for doctor appts and specialists and less time on family vacations because most of us go broke paying for medical care, etc. My son has expressed many times in tears that he wishes he could just be "normal" - it breaks my heart. It's hard for me to picture keeping my son home for a field trip...even if it does feel like the kiss of death to send him into the woods. There is also the side of me that feels like I can't shield him forever, they are in the yard, they will be in pets and they will be in soccer fields, etc. My DS14 told me he found a tick climbing up his side in the shower!!! Unattached, and he looked it up on the Internet to see for sure if it was a tick, and it was, but he flushed it down the toilet before I could inspect it. Did I freak? Yeah...A little...still am a little. But I also used it as an opportunity to talk about ticks again and the importance of checking and to try to remind him again to stay out of the woods (he won't, he's 14 and that's what boys do...wander through the woods, chuck things in the stream, still cigarettes from parents that smoke, I get it...). Last week my husband came home and said his client told him she walked her dog around the block in the street as when she got home she picked probably 60 ticks off of him. She stopped officially counting around 45. They are everywhere and I'm not sure we can avoid them. Maybe education/reminder is key -- for everyone; long pants, pony tail and a baseball cap might be an option. Or talking with the teacher about having a big lesson on Lyme disease and ticks before going in the trip? Printing out fliers for the teacher to pass out and educate other parents, etc. Reminding all the kids and having them check themselves and their friends for ticks at lunch break etc Just thinking out loud, not trying to invalidate any of you -- deep down I have the same fears.. I just think sometimes the damage emotionally is equally as hard on them. I hate to keep "robbing" my son from every little thing and sometimes feel like I really can't keep him in a bubble as much as I'd like to.