Wilma Jenks

Went to a Lyme meeting today. Lots of people with Lyme and lots of information. I was really shocked 2 hear that none of them have heard of Dr. Beal in Maryland. Isn't he one of the top LYme drs?

Doing it. Going to buy some Twinkies right now!!! LOL

What can I expect to see with this burst? Is there die off. Will she look really bad b4 she starts to look good? She goes wild and crazy with most meds. so I want to b prepared. He prescribed 40mg. for 6 days. At first I thought he said she would do something that would taper off each day. what is the usual dose?

I tried my girl on Azith & Nystatin, and then Vanco. and Diflucan, and then Rifamkin (spelling??) All of these made her OCD worse at night, and super agitated. I kept her on them for a good amount of time and then I was told to stop them. But what is interesting is she looks a bit less psycotic these days. Could these have done some good even though while on them, she was way out of control and her symptoms were really bad?? It's either that they helped a bit or the teeny teeny bit of seroquel( 6mg) at night is the one helping. Not sure.

Thanks. That's a great idea, except she wakes so easliy. I will give it a try though.

Thanks. That's a great idea, except she wakes so easliy. I will give it a try though.

My child washes her hands constantly. They are raw and painful. I bought perfume free soap for her to use, but it's probably the water that is erritating her hands too. She wears gloves so her hands don't get dirty, but its' not working too well. Any suggestion?

what makes one infusion center better than another?? someone mentioned Scott Smiths is great. Was wondering why you think that??? Thanks.

She does not do well with Abx. Seem to make her worse. Charcoal does not help Motrin does not help. Psych. drugs don't help. Her handwritting did not decline suddenly. Her suymptoms were not sudden. She was sick at birth. She has 166 on Cam Kinase. Her symptoms sound PANDAish. High levels of Clostridia. Doesn't sound like most PANDAS kids. Would you still try IVIG? Since she is non-functioning and something has to be tried. I know I sound wishy washy, but to me it's a BIG desicsion. I do not want to make this child suffer anymore, or make her worse, ya know? Thanks for understanding.

After my first appointment, of course I have more questions about IVIG. Does anyone know how Dr. B. handles this? Can I call him to ask a few questions, or do I have to schedule another appointment for that. I will also ask his secretary. Thanks everyone.

The Lyme specialist said that even if they test for co-infections...that it is not accurate. My gut instinct tells me this in NOT Lymes. Her Igenix test came back with possitive band 41. Then the next test they did "31" test, was negative. I would rather not stick her again for this co-infection thing, but I don't think Dr. B. will do IVIG if we don't have it done.

Thank You Thank YOu

He wants to check for co-infections before any IVIG is done. He said its too dangerous to do IVIG if there are co-infections. Anyone run into this?

Dr. B. wants us to check for co-infections before IVIG. We did Lyme test and the additional "31" test, but we never tested for co-infections. Doctor Beal in Maryland said even though you do this additional test, it's not definitive. Has anyone done IVIG without testing for co-infections? Also, what other blood work is done b4 you do the IVIG. She is not going to be happy with more blood work. Man, I wish all this was tested when the Igenix test was done!!! I don't think Dr. B. will do the IVIG without this additional test 4 co-infections.

Thansk so much. I am so nervous that this won't work either. Since NOTHING has ever helped. I am usually very optimistic, but I am having a hard time, because if the IVIG does not help, I am left with a very very sick non-functioning child and there is no help left, as far as I know.

Thansk so much. I am so nervous that this won't work either. Since NOTHING has ever helped. I am usually very optimistic, but I am having a hard time, because if the IVIG does not help, I am left with a very very sick non-functioning child and there is no help left, as far as I know.

Is it a 2 day procedure? If she keeps IV in over night, I guess she can't swim, right? She is 12 and almost 12, and a bit more difficult these days to get to do things. Ugh! The bribes just keep getting bigger and more expensive. LOL

Doctor B. thought my child had her tonsils out. He said there barely visable. Anyone else have this?

How can I explain this procedure to my child. I don't need to give her details, but a little info. It there a pic line, like in the PEX? Is there blood work done b4 hand? Do they fast. I guess Dr. B will explain this, but any info. from you would be appreciatied. Also if you have any tricks to getting insurance to pay, would be great. All her tests come back looking pretty good, accept the Cam Kinase and One Test for Clostridia.

Is he known to be up on PANDAS? Sorry, not sure who he is.

I called this doctor and she does not take insurance or cash. They said she is community based and they only take medicare or medicaid. Can't remember which one.

She does not have tics. She is only on lamictal right now.

I really like the current psychiatrist we are seeing. She is pretty open minded to things, but I think my child is such a bizarre case, that most people are just very perplexed by it. For some reason, the smallest amount of meds. seem to make her more violent. Sometimes when I give 2mg. of melatonin too close to something else, for example... it's like their is an explosion in her brain and she goes violent. This has consistenly been the case since a very young child. When ever I go up over 12.5mg. of lamictal, the violence starts. I tried going up higher on depakote at one point, and she ripped the furniture apart. Serveral psychiatrist told me that these drugs are not designed to make this happen. I told them, I really don't know exactly what these drugs are designed to do, but I can tell you what they do to my child. I want these drugs to work more than them, but I constantly feel like I am pleading with them to bleive me when I tell them what is happening. I don't want to waste time and evergy on trying to convince anyone anymore. Anyway...I was wondering if there are any psychiatrist that no about PANDAS, and if anyone knows of any in the Northern NJ area? I am still going to try to work things out with current pdoc., because I REALLY don't want to leave her,but I want one lined up, just in case.

Did it make ur child worse, or do nothing at all?

I am so unsure of what to try. Everything seems to effect her in an opposite way, but I just have to keep trying since her life is non-existent. We are non-functioning family. She is sooooo soooo sick. I have 2 give her a chance, dontcha think. I am so afraid of causing her more harm. I am so numb over this.