harpazo_hope

I've been reading, and I keep coming up with information on permanent damage, yet the episodes end after puberty? I'm confused! What is the permanent damage being done? I don't care what part of the brain is damaged, how will it affect my child's life? If this made no sense the first time you read it I edited it...

My son is similar. He doesn't like me talking about it with anyone, and when he sees me typing about him on message boards it causes him anxiety. I kind of know how you feel about wanting to scream it from the roof tops, but for me it's a selfish reason. I feel like yelling, "We're hurting here! This is hard! Help!" but my boy doesn't want people to know. Lately he can't help it though and if he's around anyone long enough they have seen how bad it's been getting. I told my son that there's a boy out there like him that doesn't want people to know about his "tics and stuff" and is worried people will think he's ugly, stupid, or no one likes him. He seemed interested to know there's someone else that feels like that and immediately asked how old he was. My son is almost 14.

My dd's regression was not constant. She would go in and out too. Susan Thank you so much for letting me know that. *sigh* It helps me not think of worse scenarios.

Hi... I'm back. I have another question... Do any of your children exhibit this behavior suddenly, and then suddenly return to normal? Do they have episodes of this behavior that only lasts a couple hours? My son snapped back to normal and said his head hurt tonight. I had canceled an appointment with a nurse practitioner on Thursday. I will call my doctor on Monday. Also, what search terms will help me learn more? I can't find any information on this. Thanks.

Welcome harpazo, I had been working the pandas angle for a while, and just began lyme treatment in earnest 4 days ago, IV antibiotics and tindamax. Your description of the repeating statements when excited kind of thing, I do that sometimes, probably not as much as you are describing for your son, but certainly enough to drive my wife crazy. I have been using an infrared sauna and rife machine for a couple/few weeks. Not familiar with ozone sauna. The infrared sauna is quite helpful, bought it for $350, much better than driving somewhere to pay $35 per use. The rife machine is also useful. But, I am very sensitive to EMF's, and of course, the rife machine makes them. That used to really limit the amount of time I could use the machine, and limit its usefulness. I got some devices from Gia Wellness to reduce EMF sensitivity, and while my sensitivities are not gone by any means, they are reduced enough that my body can stand the rife machine long enough to do some real good. The one I got was $600, from rifemachinebuilder.com, don't know the model name. I know there are many that are better, but many cost $2,000-$3,000, and wanted to just get started and try it out at least. I'm happy enough with it. It does not allow any frequencies to be preprogrammed or anything like that, just set the frequency, turn it on, then change the frequency whenever you want (either leaving it on or turning it off to do that). From all my reading, the lyme can be very difficult to get rid of, so it's a matter of doing all the different things you can. My doc is also looking into IVIG for me. We did a strep pneumonia vaccination to see if my body builds IgG antibodies to strep pneumonia. If not, he feels this will demonstrate immune problem enough that insurance will cover, which is critical as it is so expensive. Michael Thanks for the welcome. Good luck on the treatment. We haven't tried IV antibiotics or tindamax and I had never heard of IVIG before coming to this forum. I have heard of saunas helping. I really want a sauna... I don't even care if it is ozone or infrared... just a sauna. My mom has a regular sauna and it made me feel so good when I was feeling close to my worst. There's no getting my son in one though.

I'll PM you with the information. I have heard of the Dough rife machine, and I think it is the one with the best reputation. Mine isn't hard to use, and some of them can be programed to make it even easier. My doctor didn't suggest it until I asked him about it. He said there are only so many weird alternative treatments you can spring on a patient at one time. Now he encourages me to use it more. I wonder if it would help with strep and PANDAS. I found this when I searched - http://hiddenrecovery.blogspot.com/2008/11...e-machines.html

I bought an EMEM5 machine. I am not a good case study for Rife. I have been far from consistent with it. When I'm feeling bad I don't want to rife, and if I'm feeling good I don't want to rife because it often gives me a nasty herx. I know it is killing things (and not just me sensitive to the frequencies) because I get swollen/plugged lymph nodes when I do too much. I am going to try and be more vigilant now.

Thanks. He has been fine today! Now to figure out if it was an answer to prayer or something I did. I used every bartonella rife frequency I could find, and he started bactrim yesterday.

Thanks... I know he needs more training, but there's not a lot in Utah. A couple naturopaths and my doctor. One of the naturopaths is in a neurologists office and uses antibiotics but it's getting pretty close to code words and secret handshakes to book an appointment with this person from what I've heard. And I have the only almost lyme literate MD in the state, and yes...he is holistically oriented. I guess people come from all over the country to see him. He is very humble about his knowledge of Lyme, and says he's continuing to learn more. I was thinking about seeing Dr.K in Washington but this would be way over our budget. I am interested in his KPU protocol. Before these latest symptoms hit, I was planning on trying and getting my son on disability compensation. There are several neighborhood kids on disability for ADD. Maybe when things calm down a bit around here I will look into it. It would sure help get my son the help he needs. Several posts on lyme boards pointed to bartonella for motor tics, and my symptom of myoclonic muscle jerking. When I look at symptoms though, babesia fits my son and I better. My husband is the only one in the family with the telltale symptoms of bartonella. My instincts keep having me look at mycoplasma, herpes, chlamydia pneumonia, bartonella, and babesia. I was hospitalized with pneumonia after being bit by a tic so anything related to pneumonia raises my eyebrow. I think it will be wise to try one at a time so we know which one helps. I will be rifing for bartonella every day. I am getting discouraged with antibiotics. They have helped me quite a bit, but they don't seem to be doing anything for my son. One last question. Is it normal for this behavior to come and go throughout the day? That is what has been happening. He'll be mostly himself much of the day, with maybe a small hint of some personality change, but then for a few hours in the late morning and early evening he will talk like a baby and behave very strangely. It started with just a few small episodes every day, but these episodes lasted longer and longer, and now there are 2 or 3 episodes a day.

I think he will come back! Don't give up hope! What antibiotics and what dose is he on? Also, where do you live? Can you (if you have not already) seen one the big PANDAS docs? I just started my daughters on this probiotic for yeast and I think it is really great. http://www.symbionforlife.com/index.html Susan He's on 500mg of amoxy three times a day, and just started bactrim twice a day but I can't see what mg. the HUGE horse pills are. I'm in Utah, and don't know about any of the PANDAS doctors. My doctor is willing to look into different protocols though. He has treated other children with PANDAS, and does vitamin IVs in his office. He's a little new to Lyme, but like I said... open to new ideas as long as he doesn't find them dangerous. He didn't think co-infections were a problem in the west, but I asked for an antibiotic that works on bartonella and he gave us bactrim. He is also very big on yeast treatment. He believes that yeast plays a large role in Lyme.

Thanks... this does help. I'm sorry your daughter is ill. I guess I just wanted to know others' experiences, and whatever advice that might come with it. I don't know what I need really... I just feel desperate. I have never heard of anything like this before. He had been tested for strep titers (or whatever they test when PANDAS is suspected.) Nothing was abnormal. He has been on antibiotics for nearly a year though, and many months of diflucan for yeast/fungus. Is it possible a child could regress and never come back?

Thanks, how about what you called it - regression in age appropriate behavior/ Lyme.

Could a mod change the subject of this thread for me to something that reflects my sons symptoms?

You might want to read this - http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/42077 "The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93."

Am I reading that right? 1 1/2 cups clay? Or is that a suspension of clay and water?

I second lyme mom's reply. I tested positive on the screening test, but negative with a Labcorp western blot with only one band being positive. I have been responding to treatment though. My son had several bands come up positive on his western blot, and I believe he has congenital lyme and was infected by me. His symptoms started so young, before he had many opportunities to be unknowingly bit by a tick.

I find this really interesting. I have Lyme disease, and my symptoms get MUCH worse when I have a cold sore. It convinces me every time I get one that the herpes viruses have something to do with my illness. My son has congenital Lyme, and so far treatment has not helped him. Maybe we need to start attacking the viruses.

I'm just going to copy and paste my post in the Tourette's forum. I was kindly directed here. I am wondering if anyone else could give me advice. My son has been on antibiotics and herbal supplements for Lyme disease for almost a year now. When I took him into be tested he was also tested for strep which came back negative. Right before this all began, we were all having horrible seasonal allergies. Anyway, I don't know exactly what I'm asking you all now... I guess I'd just like to know that everything is OK and someone knows what's probably going on.

Thanks... I'm definitely going to look into that today. Last night I was doing a million things at once.

Do you know what other infections are common causes? I know only of strep. I have a rife machine, and I would like to try different frequencies for these.

Thanks. He has been on different antibiotics for almost a year now. I am going to look into PANDAS and PITAND. He hasn't been sick or anything that I know of, but we have all had allergies. Could that trigger it?

It's been happening for about a month I think, but it's been more often the last few weeks. It happens all the time, at home and at church, at the doctors office and in stores. He is homeschooled. I think he has congenital lyme, and his lyme symptoms have been chronic, so no change around the time he was diagnosed.

I have taken my son to his doctor, and will be making an appointment with another. My son has been acting very strange. At first I thought it was a tic, but it's taking over him. He talks like a toddler, and he's almost 14. He'll repeat things like an excited three year old... "I'm happy! I got a new game! I'm very happy, it's new! It's not broken!" And he'll tell me the same things over and over. It's similar to a tic in that way, but it's affecting the way he communicates with me more and more each day. If he wants to know what is for dinner, he'll talk to me in this way. My younger son says he sounds so innocent like a little kid and it makes him feel sorry for his brother. Has anyone seen anything like this? Maybe it's his Lyme disease. It's scaring me.

Sorry it has taken so long to get back. I forgot about this site...things have been nuts. What I mean is that CHRONIC Lyme and CONGENITAL Lyme do not exist according to the "authorities." It's kind of like PANDAS in that way. There are some doctors who have pulled their heads out of the sand and are treating it, but as far as national recommendations and insurance companies go, my son and I could not possibly have Lyme. Anyway, treatment has not been helping yet. He's been on antibiotics since my last post. I think his tics have become worse. He has also continued to have absence seizures. This time I enabled email notification of replies.

Thanks for the replies. The seizures have let up for the last few days. I haven't noticed any anyway. Hi, it was a western blot, and I think it is congenital Lyme...which doesn't exist. He has had joint problems since he was a toddler, and I tested positive for Lyme too. It's definitely not acute anyway. Here's a link for those interested: http://www.lymeinducedautism.com/ He has an appointment in July, and treatment will start then. I'm relieved that I may have an answer as to WHY. I can never believe our bodies do strange things like with TS or arthritis for NO reason. I'll try and update how the treatment affects his tics.