matis_mom

Thanks for the link... I wish they could do a study including any maternal illnesses and how that correlates to the child's mental health later on. Also very interesting in the original article how they emphasize it's not just the virus but the immune response that determines whether or not there will be neurological/psychiatric involvement... sounds so much like PANDAS. I wonder did they ever try plasmapheresis on schyzophrenia or MS patients?

I found this very interesting so I'm posting it here too so no one misses it! If anyone is into herbal stuff, please read through the end... they are using Artemisinin for schyzophrenia! http://discovermagazine.com/2010/jun/03-the-insanity-virus/article_view?b_start:int=0&-C=

Absolutely fascinating! Thanks for posting this. It hits home with me since I have an aunt who is schizophrenic... My mom has issues too. My grandma is no longer with us, it would have been so interesting to find out what might have been going on at the time my aunt became ill. I know her dad had died recently, so stress may have brought it on. But in general "that side" of the family is riddled with mental problems. But, for my family, oh my! So much hope. To me this article emphasizes how important it is to get my kids treated properly. It goes along the line of the "multiple infections" theory that was posted not too long ago. Someone had suggested to me the use of Lomatium, which is supposed to target viruses. I'll definitely add that to our regimen. And I found super interesting the fact they are trying out Artemisinin. I have been giving it to my daughter because it's one of the herbal remedies recommended for Lyme and co-infections! Thanks so much for posting this!

DS13 is on it too. I just started him on the Specific Carbohydrate Diet, which is brutal, no grains whatsoever. Then we did the sensitivity testing and found out he is indeed allergic to wheat, gluten, dairy, and fish. We did see some improvement on the diet. Now we are just doing GFCF for him. I am trying really hard to transition everyone into it, but it's not easy. Our LLMD recommended to move everyone to GFCF. About the cholesterol dropping, it makes total sense. When you cut out gluten, you cut out a ton of process food. Taking out refined sugars and starches will definitely have a positive impact in your cholesterol levels. Don't ask me to explain the scientific part of it, but apparently "fat" is not the culprit when it comes to cholesterol... it is SUGAR and starches. If you are going to give it a try, be prepared! It takes great commitment. I found it easy to not buy the junk, just a hard time finding enough stuff to replace it with! Veggies don't feel you up as quickly as bread/pasta, so I find they are going through a lot more food!

They are updating their system and it's down until Monday, so maybe that is why it got bumped? But the other five prescriptions went through... I can't access my account, nor can anyone help me on the phone until the system is back up. I thought I would be saving them $ by just doing them at home!

I would suggest you see an LLMD. Based on symptoms they might just be able to diagnose without a positive test result. That is what our LLMD is doing for us. My son finally got a positive through Labcorp, but my daughter has "nothing to show" for her emotional troubles... no elevated ASO, zilch on the Western Blot, all labs normal. Nevertheless, based on history (she's had tic bites) and symptoms, he is treating her for Lyme/PANDAS. I guess it depends a bit on finances. I was worried I would spend so much on testing I wouldn't be able to afford treatment! If resources are limited, just concentrate on finding a good doctor to work with. Whether it's PANDAS or Lymes, or PANDAS and Lyme, a good LLMD will be familiar with PANDAS and the antibiotics usually target both, so you really have nothing to loose by going down that path.

I was so happy our LLMD to come home with a script for weekly shots for dd. I tought, "great, will just get them at the pharmacy and dh can do the honors!" Well, our insurance for some reason will cover none of it, and it's not cheap... Has anyone had this? I call but the system is down so they can't help me until Monday...

So we had a follow up for ds13, and new patient appoinment for dd. DS has made slight progress, but nothing remarkable, so he'll be treated for Bartonella (based on symptoms and progress). Keep Augmentin, decrease doxy, add Rifampin on weekdays and Zithromax during the weekend. For dd (based on symptoms again, all her labs look fine), we are starting with Augmentin daily, bicillin shots once a week, and Samento (work up to 5 drops twice daily). The pediatrician had tried doxycline on her and she just kept throwing up on it, so we are trying a more gentle approach for her. I really appreciate that he is moving ahead with treatment based on symptoms. He said even if we did Igenex we could get nothing to show for it and he prefers to "just treat the patient." He emphasized the need to give them lots of probiotics. I am hopeful dd will start to see some improvement!

It hurts when the needle goes in (they need a bit thicker needle because the liquid is thick and cold), and it hurts MORE as they push it in because, again, it's thick and cold! It's like a painful burning sensation, and it's not over in a second like a "prick", it keeps hurting until it's all in, and it takes a few seconds.

Man! And I'm only 15 years into a 33-year job (my youngest is a baby!) I remember people saying that when they are little the job is very "physical" but when they are older it's more mental, dealing with teenagers and stuff, and it gets tougher. I couldn't imagine that being the case. I thought, give me a good night sleep and I can handle anything. Now I have to agree: the mental stuff is a lot harder to deal with! But just like when they are little and you are exhausted and you think you can't handle another sleepless night, THIS TOO SHALL PASS! It will, hang in there! I keep thinking in 20 years from now hopefully we'll be getting together with our kids and just remembering the good stuff, they'll be thanking us for all we did for them, and asking us advice on how to raise their children... I dream of being a granma!

I've heard of them being used for both PANDAS and Lyme. My son got one (he has both), and I know of a boy who was getting them like 3x a week. I was given one because of strep and "suspected" Lyme. I can tell you to things: 1) it hurts like heck (and I'm no whimp!) and 2) Some claim it really clears your head (lifts the "fog"). I did not get that, but I can tell you by that evening I totally felt wiped out, like I was getting the flu (I suppose it was herxing?) The good thing is you don't get your intestinal bacterial wiped out from it

U R kidding? OMG my husbands grandpa was diagnosed with diabetes and dementia and he is still alive!!!! That is totally insane because really it could be lyme!! G! that would kind of explain why there is so much depression, diabetes, thyroid disease, autoimmune illnesses going around... Maybe we are the lucky ones to find out through our children's illness what the root cause of all this crap is!!!

Hi NAT, By what you tell us the girl probably had strep throat and passed it on to you (it is transmitted through dropplets so it's very important that everyone washes hands, no sharing cups, etc). If you can't get to your doctor soon enough (although if you tell them you think you have strep, they should see you pretty quickly), you can always try the MinuteClinic at CVS. There are many antibiotics that are safe while you are pregnant, and it is better to treat it than to do nothing. So do get checked out, and if there is anyone else in the household/family, they should get checked too. Otherwise you guys will just keep passing it around. Some people can have it without any symptoms at all, that's why you need to check everyone in the house, especially since you've had it this long. If you catch it and treat it, strep is not dangerous, but untreated it can cause serious problems (like in your DF's daughter!), so it needs to be taken seriously. It would also be a good idea to check the girl again to make sure she has indeed cleared it. It's happen to my family a lot that even after taking the antibiotics, they still have it. They may have to put her on antibiotics again if she still has it. And make sure she takes it exactly as prescribed (usually for at least 10 days). Sometimes they have to try with different/stronger antibiotics if the first one didn't do the trick. Where do you live? Maybe someone here as a recommendation for a local PANDAS doctor. If you have any other questions, please keep asking.

I know the feeling, like PANDAS is sucking the life out of you... It seems you are giving all you've got in terms of treatment. It is so draining, the mental stuff... They want you there, they want you to support them, their need is real, but you look at them and you know it doesn't make any sense. They know it doesn't make any sense, but they can't help it, and you can't help them, cause no matter what you say or do, it doesn't help. I HATE THAT. So frustrating... My original PANDAS ds, now 13, is doing better now that we started Lyme treatment. My dd10 I'm pretty sure has PANDAS and/or Lyme, and we are seeing an LLMD on Friday. With her, the fears, the doubts, the tears, the depression, the constant need for reasurance is totally freaking me out. I don't want to do it. I keep shutting her off, I change the subject, I send her off to do something. I feel like I'm being a meany, but when I try to help her out, we just go around in circles, and I get very frustrated (maybe I'm a little PANDAS) Well, I am not sure if this help you at all, other than misery loving company... I see you've tried many things and I am not questioning your decisions, but a T&A might not be such a bad idea if progress is not significant. According to our doc, the tonsils can become an absess and then they just kind of block off the abxs and you don't get anywhere. She said they had patients on antibiotics for months and months without progress and once the tonsils were out, then the antibiotics started working. Hope you feel better. You know you are not going anywhere. I do sometimes fantasize about a different life, but it's a waste of mental energy. It is what it is, and we have to make the best of it. God bless, Isabel

I'd just say this doctor is interested in kids with tics. I don't think she will necessarily equate doctor with "something is wrong with me," especially if you are relaxed and upbeat about it. Dr. Latimer will ask a lot of questions, some directed at the child, some at you. You can always write a note for the doctor and have the ladies at the front desk give it to her before you go in. Explain that your child does NOT know why she is there, and highlight any information you may not want to share in front of your daughter. I'd be even better if you could bring someone else along to the visit so they can sit with your daughter while you talk to the doctor.

When in doubt, take him in! That's easy for me so say, as I have a pretty low copay... You can always just look in his throat and see, or get a home kit to do the rapid yourself. I base it a lot on behavior... Every time ds has acted up, someone else turns out to have strep!

I'd love to help. I'll pm you.

Just think I'll get to gain it all back at Christmas!!!

I was surprised too at how eager the ENT seemed. I was thinking "is this guy knife-happy or what?" So that's why I got a second opinion. And since dh has to stay home because of his leg anyway, we may as well take care of this now. And yes, my ears have been bothering me a lot lately. I am so hoping this is the beginning of the way back from a year and a half of non-stop medical issues for our family.

No missprint! He was recommended to me by a couple of fellow lymies I'm just happy finally someone is taking this seriously!

Infectious Disease specialist agreed, tonsils need to come out! And he gave me order for a whole bunch of bloodwork to look into Lyme and co-infections, plus he wants me to have and Echo to make sure my heart is ok. Yikes!

After being treated with Augmentin, Biaxin, and Cefuroxime, my PCP sent me to the ENT who was very quick to recommend a tonsillectomy. I saw the Infectious Disease specialist today for a second opinion, and to look into Lyme, and he agreed it's a good idea to take the tonsils out (he said my right tonsil looks HUGE). He took me very serious and wants to have my heart checked, and prescribed about 15 different lab tests (among them Lyme and co-infections, even though he is not an LLMD, just a good ID doctor who takes Lyme seriously). DH broke his ankle a couple of weeks ago, so if at Wednesday's follow up everything looks OK for him and he can start driving, I'll be getting my tonsils out next Monday. PANDAS ds13 is doing ok right now, with ups and downs related mainly to herxing I believe, but I'm not going to sit here and wait for strep to rear it's ugly head again around here...

Wow, I cannot imagine how you feel right now. To know all along there was something causing all this trouble. To know your mom probably had it too. To think if you had been treated your whole life might have been different... I would be so angry and confused. But at the same time, you know things can change, you know there is help out there. It might seem right now like you don't have the time, energy, or resources, but trust that it will happen. You will get better. When faced with things like this I found it helpful to ask myself what is the purpose of this, rather than what is the reason for this. Not asking "why" did this happen to me, but "what for" What good is going to come out of this, who will I be able to help because of this, how much closer to God can I get by being in this situation. Hang in there, you will get better. Like someone put it to me when I was feeling very overwhelmed about this whole Lyme thing (almost positive I had it while pregnant with my youngest, three other kids showing symptoms, etc, etc): EVERYTHING IS FINE, YOUR PERSPECTIVE JUST CHANGED. So you could look at it that way. Nothing has really changed, the picture is the same, only now you can make sense out of it, and start fixing it up!

Thanks for posting this! I am sitting on the fence about getting my own tonsils out at the young age of 40, but more and more I'm leaning towards just getting them out and be done with it!

He had gut issues and so the LLMD ordered a stool culture (I think it was called a "Comprehensive GI pannel") through DiagnosTechs (it's one of those specialty labs that don't take insurance). My PCP was NOT recommending the tonsillectomy either (for me), but the ENT was all for it (I didn't even bring it up, I swear!) I find it's one of those things where some people are totally opposed, some are all for it, and it just depends who you talk to. You could take your son to the ENT and see what he thinks. In any case, you will have to go through the ENT to get them out, so you may as well start there.