regression in age appropriate behavior/ Lyme Disease

[harpazo_hope]

I haven't read all the responses but have a few things to add...

 

You asked if a child could regress and not come back. I believe there is a condition along the autistic spectrum called Childhood Disintegrative Disorder where they completely regress back to babyhood, lose speech, etc. never to obtain it again. However, I believe that starts in the younger years and is extremely uncommon. I seriously doubt you have anything like that going on.

 

As far as PANDAS, my 5 yo regresses and does babytalk during exacerbations and it drives me nuts!!!!! He will speak in one or two word sentences and then get mad if I don't know what he wants, etc...

 

Remember that many do not get a rise on the strep titers. One of my boys does get a rise and the other does not, even right after positive throat culture. One of my boys had strep show up in his stool culture the same week of his first ever pandas exacerbation. So if you really want to find strep, you have to investigate! but then again there is always the Cunningham Test (which I am sure has been mentioned above) and there is also just clinical history (waxing and waning, abrupt onset, etc.). Also, something to know is that the first "pandas exacerbation" is always brought on by strep, but after that anything that activates the immune system can cause pandas symptoms. I used to go around town chasing down a positive strep culture in my boys when they went downhill, now I just have the doc call in a prescription for an increased dose in antibiotics when things really flare.

 

Stephanie

 

 

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.

[lyme_mom]

I haven't read all the responses but have a few things to add...

 

You asked if a child could regress and not come back. I believe there is a condition along the autistic spectrum called Childhood Disintegrative Disorder where they completely regress back to babyhood, lose speech, etc. never to obtain it again. However, I believe that starts in the younger years and is extremely uncommon. I seriously doubt you have anything like that going on.

 

As far as PANDAS, my 5 yo regresses and does babytalk during exacerbations and it drives me nuts!!!!! He will speak in one or two word sentences and then get mad if I don't know what he wants, etc...

 

Remember that many do not get a rise on the strep titers. One of my boys does get a rise and the other does not, even right after positive throat culture. One of my boys had strep show up in his stool culture the same week of his first ever pandas exacerbation. So if you really want to find strep, you have to investigate! but then again there is always the Cunningham Test (which I am sure has been mentioned above) and there is also just clinical history (waxing and waning, abrupt onset, etc.). Also, something to know is that the first "pandas exacerbation" is always brought on by strep, but after that anything that activates the immune system can cause pandas symptoms. I used to go around town chasing down a positive strep culture in my boys when they went downhill, now I just have the doc call in a prescription for an increased dose in antibiotics when things really flare.

 

Stephanie

 

 

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.

 

Tell me about the rife machine. I am looking into that now but haven't been able to find much info. I want to buy either that or an ozone sauna to use in conjunction with the antibiotics. I read that the rife machine is excellent for treating lyme. I am wondering how it compares to the ozone sauna.

[harpazo_hope]

Tell me about the rife machine. I am looking into that now but haven't been able to find much info. I want to buy either that or an ozone sauna to use in conjunction with the antibiotics. I read that the rife machine is excellent for treating lyme. I am wondering how it compares to the ozone sauna.

 

 

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.

[lyme_mom]

Tell me about the rife machine. I am looking into that now but haven't been able to find much info. I want to buy either that or an ozone sauna to use in conjunction with the antibiotics. I read that the rife machine is excellent for treating lyme. I am wondering how it compares to the ozone sauna.

 

 

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.

Where did you get it? Have you heard of a doug rife machine? They talk about it in the book "Top Ten Lyme Disease Treatments for Lyme Disease." The author praises the ozone sauna as a good way to detox and kill bugs but he says that the rife machine is the best alternative treatment to use for lyme. Is is hard to learn how to use it? Did your holistic doctor suggest it?

[harpazo_hope]

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

[MichaelTampa]

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

 

 

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

[harpazo_hope]

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

 

 

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.

[harpazo_hope]

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.

Edited May 2, 2010 by harpazo_hope

[thereishope]

My son was definitely a Dr Jeckyl and Mr Hyde.

[smartyjones]

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? Thanks.

 

 

sorry harpazo - i'm not exactly sure what you mean by 'this behavior'. we've talked about 'flipping the switch' with my son. there certainly have been times when that's what it's been like - flipping a switch on and off the behavior exactly like turning a light on or off.

 

he's doing fairly well and just yesterday at his t-ball game, he was happily running and fooling around in the dugout (which i hate) but totally interacting and enjoying the other kids and the game. i said to my mom - it could just as easily be turning that switch to last year's soccer when he refused to play and sat in my lap with 'there's a reason but i don't want to tell you' and was withdrawn and didn't speak to anyone.

 

that's just an example b/c i said it yesterday. he also would be wild with tantrum and irrational and then have the cutest, sweetest smile and hug that melts your heart ready to happily read a book or play a game.

[Suzan]

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.

 

My dd's regression was not constant. She would go in and out too.

 

Susan

[harpazo_hope]

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.

 

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.