Iowadawn

I started purchasing a few extra regular bulbs each shopping trip, too. Dawn

This goes along with the transfer factors that are being talked about on the Lymes forum. Specific transfer factors are often recommended for lyme & co-infections. Interesting. Dawn

Gag!!!%^$&*

DeAnn- I wish I had answers for you. My heart aches for you and Aaron. I was awake at 3 this morning thinking of your situation. The best I have to offer is my cyber-shoulder and prayers. A Divine appointment--that's what the NP is! I'm always available and would even answer the phone in the middle of the night if you need to call. Anxiously waiting to hear how this works out. Dawn

"A PDD-NOS, autistic traits" along w/ other alphabet dxes over the years ahead of PANDAS dx.

Welcome! I haven't read your post closely, yet. My immediate thought is your case with identical twins may be significant to Dr. Cunningham and her research. She would welcome an email. Gotta run---snowday and kids coming home really soon. Dawn

They are in the third stage of trials for IVIG usage in Alzheimers patients. The results have been very promising. If it is b/c of infections you can easily see why. Why has it taken us so long to start reconnecting the brain back to the rest of the body??? A rhetorical question--just infuriating. Dawn

I kind of think that is the doc's thinking in doing this for the time being instead of Tindamax. We are doing quite well with the IVIG and his experience w/ Mepron was pretty hard. Taking it slow and steady right now so as to keep him moving forward. We have been at this type of stage b4, only w/o the lyme tx. Perhaps Tindamax will be added later. Dawn

Any experience with Grapefruit seed extract? Our LLMD wants to do this instead of Tindamax, or at least to bust up biofilms. Our son will be doing his second IVIG since starting TBD tx. He had his 3rd HD one 3 weeks ago and will have .75g/kg in a week. I'll report on his progress in another posting. I think this is a kinder/gentler approach. Just seeing if there are any grapefruit seed extract experiences out there. Dawn

Our success BCBS in Iowa has been after much squeaking. It didn't come so much with the help of docs, rather with the benefits dept and my husband's employer's BCBS rep. A little emotion and demonstrating how they are cutting off their nose to spite their face (e.g., paying for meds that are not approved for our age of child, multiple hospital stays, ambulance rides...stuff that hasn't worked) Demonstrating how he responded to the first one and now look at him. How Aetna & UHC & Canada recognize it's efficacy. And then throwing it on to their shoulders....If you don't like what my doctor is recommended as treatment for this disease and everything we have tried isn't working, please tell us what treatment you would recommend that will work and you will pay for, b/c my doc would like to know. Something along that line. Give them an emotional tug--my home & family bear the scars; the feeling of seeing your child purposely run out in traffic in front of a bus egging the driving to run him over; seeing your school-loving son become homebound and almost 2 years behind in school, etc. Just keep squeaking. Their job is to wear you down & hope you go away and give up. We PANDAS parents are not known for doing this! Dawn

Another neat "feature" (that bolsters the study) is that the placebo kids will be offered the IVIG at the 6 wk or 3 month mark(I don't have the study handy). I am hoping the data will be sooooo abundantly clear that some the results will be known well ahead of the 3 year mark and IVIG will be treatment option, period.

I would agree about an ophthalmologist appt. Sudden floating stuff in the eye isn't to be taken lightly. I know they got me in lickety split when I called and explained my symptoms.

SOunds very similar to a premature vitreous detachment I had in one eye about 5 years ago. The spirochete-looking floaters appeared in an arc. It was weird. Had an ophthalmologist examine me and render that dx. It was explained that as we age the vitreous naturally shrinks, but the space created is filled in with fluid. With a VD the process happens quickly. I still have floaters of one kind or another in this eye today. Probably wouldn't be a bad idea to get this checked out to make sure something serious isn't occurring. Dawn I re-read your post--I have also had what is called ophthalmic migraines (optic migraine). This arc of "whatever" would start in the mid section of my vision and then gradually move outward. They can make seeing very difficult and frustrating & scary. In fact I had one about a month ago--it had been 10 years since my first one. It set me into a mini panic attack until I got my bearings. They usually dissipate within 15-30 min. Google either of these conditions, but might be worth a dr. visit.

I'm just a bit cynical---like George Carlin likes to say: "It's a conspiracy, man!" I would agree these guys don't need more publishing. The temp in the room at the gathering of PANDAS docs & the naysayers was not exactly amicable I was told. The changing of name seems to be key to them saving face. I'll stick with my original feeling that what is occurring is "an alignment of all the planets." I really think it is going to be for the best--never fast enough--in the end for this disease & all those suffering, whatever it will be called. I am going on nothing but my gut instinct. I could be all wet, but I truly think there is a method to the madness. We'll just have to wait--some more. Dawn

Hey my Wis. friend! This sounds legit. There are different brands--60 bucks a bottle seems to be the going rate on the net. You give it a try & let me know how it works out for you!! Then I'll try! Dawn

A lightbulb just went on in my head. Just tel me if I need to shut it off----Could this paper being published be the way for the naysayers to get to save face??----"See there was never PANDAS, it was really XYZ Disease. We didn't believe in PANDAS but,We believe in this. That is all we were ever trying to say." Hmmmmm?? I really think there is an ulterior motive, here. Tell me if you think I'm all wet. Dawn

I haven't read through all your input, but I am going to throw out my thoughts. I believe it is no coincidence on the timing of the release of these various papers and the study. That's my first thought. My second is that Leckman is making the case that "It ain't just strep causing these exacerbations." I think there is a method to their madness. I think they are wanting to get all their ducks in order before they change the name. Bus----sterrrr!!!!!!! MHO. Dawn

My guess would be that Cunningham will get in on the action. I bet they will look very closely at markers in the immune system to see if there are correlations. This is super!! Also, the fact that the placebo kids get the option after a short six weeks. Let's pray the study fills quickly so we can get on with things. I really wonder if the white paper is going to get put on hold until after this study is completed. I could see compelling reasons why they would do that. Just a thought. Dawn

You are a definitely in the correct profession. Having an understanding teacher/school district is nine tenths the solution! So I congratulate you. Your district should have access to a school psychologist. This person should be invaluable to you, even if the student has no IEP . A panic attack is a perfect characterization of what is happening in these kids' brains. If you have had one (I have ) it is a horrible feeling. You know the feeling. Forcing the issue will not work. At least this is our experience. The other suggestions are great--if he is able to get past this. Is there another assignment he can do in the mean time. If he is having trouble in your class he is probably having problems in others? and I would bet the teachers are not all as understanding. Has an IEP been suggested for him? This could help spell out the need for accommodations and what they may look like--this is usually where the school psych would get involved. We would be up a creek without a paddle without our wonderful teachers here. The IEP we have this year has been invaluable in spelling out the flexibility & accommodations our ds11 needs. Dawn PS Point the mother to this forum, too.

Biaxin is known for producing a metallic taste. I have experienced this, as have my kids. Taking Biaxin? Dawn

My hope is the results will be Sooooo convincing very early on that the placebo kids will get offered the IVIG. Sometimes this happens. AAlso, Sometime studies will reverse the double blind placebo so that the placebo gets the real stuff & the real stuff gets the placebo. I hope hope hope there is something in the study to allow this. Just talking outloud. Dawn

1000mg/tid Amox and 500mg zith a day is what our LD prescribed for our oldest. Is MUCH easier on her insides than some other stuff. I am seeing improvement with her, mellower, and more clear thinking--she presents wayyy differently than my boy. RE our son. HD IVIG a week ago. We were crashing & burning after the last two by now. All I'll say is that I am NOT carrying around any shoes so as to avoid any shoe-dropping thingy. All I will update now. Dawn

You are light years beyond your age in wisdom, Emerson. Not a one of us has answers, just our individual experiences. Well said, Emerson. Dawn