Re: Lyme in Autism and HBOT? (BorreliaMultipleInfectionsAndAutism)

[Guest guest]

I have not heard about HBOT being bad for lyme but I have heard steroids are bad for lyme. I have also heard that lyme is difficult to treat (resistant to antibiotics) because the bacteria is trapped in a biofilm. If you can dismantle the biofilm then the antibiotics can get at the bacteria. You can google around and get lots of info about biofilms. We are using a biofilm protocol in conjunction w/ antibiotics to treat my sons PANDAS (strep). It is a long process but we are seeing some nice gains. I do not know how well azithromycin works for lyme but using azithro low dose and pulsing attacks biofilm too.

Subject: Lyme in Autism and HBOT? (BorreliaMultipleInfectionsAndAutism)To: BorreliaMultipleInfectionsAndAutism Date: Saturday, January 22, 2011, 11:15 PM

Hello. I am new to this group but I have been with TACA an autism support group for years. My son now 17 was just diagnosed with Lyme. We are on the special diets, chelated, supplements, MB12 shots and on HBOT 5x weekly. Our DAN-Lyme doctor advised to stop HBOT for a year as it does something to the cells vis-à-vis the lyme. Has anyone heard this from their doctor? We are just starting allicin-garlic, D3, iodine, HH-2 and R-5081 by Zhang and 25B probiotics. We are awaiting more tests to come back on co-infections. Any advice or comment on the treatments thus far? Appreciate any help. Many tks. Fransel (son 17yrs) Fransel

Sender: BorreliaMultipleInfectionsAndAutism

Date: Sun, 23 Jan 2011 01:56:46 -0000

To: <BorreliaMultipleInfectionsAndAutism >

ReplyTo: BorreliaMultipleInfectionsAndAutism

Subject: Re: Any hopes for speech?-long

I have a non-verbal son with autism/apraxia. He will be 10 years old in about a week. We got our son an AAC device (Vantage) when he was about 5 years old. It has been extremely helpful in reducing his frustration level. It was also very helpful to have a trained speech therapist help him with the device. He now flies through it and spells items. He still has a lot to learn on it, but it was worth it. Our children need to communicate things. They get very upset when they don't think anyone doesn't understand them. Prior to that, we used PECS. We have done many things also. Diets, supplements, NAET, chelation, HBOT, etc. We have had moments of "language." We were excited and thought we were on the right track. As we continued using other approaches, he developed a reaction, which has resulted in a tic. Separately given the items were fine. When taken during the same day, the reaction was horrible. We had to stop everything. Now we are

starting over slowly. Things that had worked before now aren't. It's very strange, but we also discovered he had PANDAS and HHV-6. I highly suspected Lyme (because he shows signs of Bells Palsy), but only tested positive for one band through the hospital lab. We plan on retesting him through IGENIX soon. We are currently starting another round of HBOT again. This is the only thing that had reduced his strep titers (PANDAS) significantly for him. It also has increased his "awareness" for things around him. I know you understand what I am saying. Our son still squeals and makes his own unique sounds. Other times we can get words out of him, but not too many (less than 10). I strongly feel that we are going to see some results in the speech area soon with this round of HBOT. We shall see. I hope that our story doesn't cause you to be disheartened. It is not my intention. As you said, what works for one may or may not work for another. It's just our

story. We haven't given up on hope and we certainly do love him more than words can ever say. We know that our answer is out there. The missing piece of our puzzle. After many hours of research, I finally feel I'm on the right track to isolating the things that "cause" his lack of speech. Now it's a matter of finding the right treatment/(s) and in the right order. The best of luck to you and your family. Hang in there. You are on the right track.> > > > > > > > > > Can I be blunt?   This "window" doctors and some support groups have "advertised" is PURE bullshit!  I don't believe it and I never will. I am with Jeannette and . Just believe Krassi! See your son communicating, picture it in your mind...picture him healthy and happy. Just keep the viRuut...if you read this post could you PLEASE share your story with the group so the moms can get some inspiration. Hugs,Tami In a message dated 1/21/2011 2:36:04 P.M. Pacific Standard Time, klwadler@ writes:  Why do these drs feel the need to make such stupid comment? I have heard of kids starting to

talk at age 16. They dont understand autism so how can they know if they will talk or not? You are doing all the right things. just keep going. I have heard that high dose vit E with fatty acids helps. For my son CalEDTA helped bcause it got rid of some lead. There is a correlation between lead and apraxia. Dont worry about the future, just keep> > going. you never know which thing is going to help.In a message dated 1/21/2011 4:18:58 P.M. Eastern Standard Time, krassi_G_2000@ writes: Hello everybody,> > This is probably going to be a long post, but I really need to share my fears and thoughts and hopefully get your opinion and experience.> > Few days ago my son got evaluated from developmental pediatrician and of course found him to be autistic. We already knew that with my husband, so nothing shocking, although 2 years ago when we went to developmental pediatrician assessment they found that my

son is not autistic but with sensory disintegration disord  > > > >__________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________> > > > The message was checked by ESET NOD32 Antivirus.> > > > http://www.eset.com  __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________  The message was checked by ESET NOD32 Antivirus.  http://www.eset.com > > > >__________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________> > > > The message was checked by ESET NOD32 Antivirus.> > > > http://www.eset.com> >>

[Guest guest]

At a presentation at the 2010 LIA Conference titled "The judicious use of HBOT in treating children with autism and lyme disease", the presenter mentioned that for autism, hbot is typically done at 1.3 - 1.5 atm and that in order to kill lyme bugs, the atm must be higher.I've never done hbot so that's about all the info I can offer on this topic.

Subject: Lyme in Autism and HBOT? (BorreliaMultipleInfectionsAndAutism)To: BorreliaMultipleInfectionsAndAutism Date: Saturday, January 22, 2011, 11:15 PM

Hello. I am new to this group but I have been with TACA an autism support group for years. My son now 17 was just diagnosed with Lyme. We are on the special diets, chelated, supplements, MB12 shots and on HBOT 5x weekly. Our DAN-Lyme doctor advised to stop HBOT for a year as it does something to the cells vis-à-vis the lyme. Has anyone heard this from their doctor? We are just starting allicin-garlic, D3, iodine, HH-2 and R-5081 by Zhang and 25B probiotics. We are awaiting more tests to come back on co-infections. Any advice or comment on the treatments thus far? Appreciate any help. Many tks. Fransel (son 17yrs) Fransel

Sender: BorreliaMultipleInfectionsAndAutism

Date: Sun, 23 Jan 2011 01:56:46 -0000

To: <BorreliaMultipleInfectionsAndAutism >

ReplyTo: BorreliaMultipleInfectionsAndAutism

Subject: Re: Any hopes for speech?-long

I have a non-verbal son with autism/apraxia. He will be 10 years old in about a week. We got our son an AAC device (Vantage) when he was about 5 years old. It has been extremely helpful in reducing his frustration level. It was also very helpful to have a trained speech therapist help him with the device. He now flies through it and spells items. He still has a lot to learn on it, but it was worth it. Our children need to communicate things. They get very upset when they don't think anyone doesn't understand them. Prior to that, we used PECS. We have done many things also. Diets, supplements, NAET, chelation, HBOT, etc. We have had moments of "language." We were excited and thought we were on the right track. As we continued using other approaches, he developed a reaction, which has resulted in a tic. Separately given the items were fine. When taken during the same day, the reaction was horrible. We had to stop everything. Now we are

starting over slowly. Things that had worked before now aren't. It's very strange, but we also discovered he had PANDAS and HHV-6. I highly suspected Lyme (because he shows signs of Bells Palsy), but only tested positive for one band through the hospital lab. We plan on retesting him through IGENIX soon. We are currently starting another round of HBOT again. This is the only thing that had reduced his strep titers (PANDAS) significantly for him. It also has increased his "awareness" for things around him. I know you understand what I am saying. Our son still squeals and makes his own unique sounds. Other times we can get words out of him, but not too many (less than 10). I strongly feel that we are going to see some results in the speech area soon with this round of HBOT. We shall see. I hope that our story doesn't cause you to be disheartened. It is not my intention. As you said, what works for one may or may not work for another. It's just our

story. We haven't given up on hope and we certainly do love him more than words can ever say. We know that our answer is out there. The missing piece of our puzzle. After many hours of research, I finally feel I'm on the right track to isolating the things that "cause" his lack of speech. Now it's a matter of finding the right treatment/(s) and in the right order. The best of luck to you and your family. Hang in there. You are on the right track.> > > > > > > > > > Can I be blunt?   This "window" doctors and some support groups have "advertised" is PURE bullshit!  I don't believe it and I never will. I am with Jeannette and . Just believe Krassi! See your son communicating, picture it in your mind...picture him healthy and happy. Just keep the viRuut...if you read this post could you PLEASE share your story with the group so the moms can get some inspiration. Hugs,Tami In a message dated 1/21/2011 2:36:04 P.M. Pacific Standard Time, klwadler@ writes:  Why do these drs feel the need to make such stupid comment? I have heard of kids starting to

talk at age 16. They dont understand autism so how can they know if they will talk or not? You are doing all the right things. just keep going. I have heard that high dose vit E with fatty acids helps. For my son CalEDTA helped bcause it got rid of some lead. There is a correlation between lead and apraxia. Dont worry about the future, just keep> > going. you never know which thing is going to help.In a message dated 1/21/2011 4:18:58 P.M. Eastern Standard Time, krassi_G_2000@ writes: Hello everybody,> > This is probably going to be a long post, but I really need to share my fears and thoughts and hopefully get your opinion and experience.> > Few days ago my son got evaluated from developmental pediatrician and of course found him to be autistic. We already knew that with my husband, so nothing shocking, although 2 years ago when we went to developmental pediatrician assessment they found that my

son is not autistic but with sensory disintegration disord  > > > >__________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________> > > > The message was checked by ESET NOD32 Antivirus.> > > > http://www.eset.com  __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________  The message was checked by ESET NOD32 Antivirus.  http://www.eset.com > > > >__________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________> > > > The message was checked by ESET NOD32 Antivirus.> > > > http://www.eset.com> >>

[Guest guest]

Each doc will have their own ways and knowledge. HBOT is very

unpredictable, and each child not only responds differently, but the

ones who do respond favorably will do so at different levels of Oxygen.

So, at the very least, I would think that your doc would not want to mix

all these new pathogen-killing treatments with HBOT. It's important for

the doc to see your child's reaction to these pathogen-killing

treatments in the manner that he is used to, so that he can compare the

reaction to the reactions of others he has treated so he can learn more

about your child. Mixing that with other treatments, like HBOT, would

cause him to wonder what is from HBOT and what is from the

pathogen-killing treatments, whether the reaction was good or bad.

Something important to look into, is that some of those pathogen-killing

herbs can cause some strong die-off. I would talk to your doc and get an

idea of the die-off to expect and what to do when it happens.

Love and prayers,

Heidi N

Hello. I am new to this group but I have been with TACA an autism

support group for years. My son now 17 was just diagnosed with

Lyme. We are on the special diets, chelated, supplements, MB12 shots and

on HBOT 5x weekly. Our DAN-Lyme doctor advised to stop HBOT for a year

as it does something to the cells vis-�-vis the lyme. Has anyone heard

this from their doctor? We are just starting allicin-garlic, D3, iodine,

HH-2 and R-5081 by Zhang and 25B probiotics. We are awaiting more tests

to come back on co-infections. Any advice or comment on the treatments

thus far? Appreciate any help. Many tks. Fransel (son 17yrs)

Fransel

[Guest guest]

our lyme dr incouraged us to do HBOT

From: franselw@...

Sent: Saturday, January 22, 2011 11:15 PM

To: BorreliaMultipleInfectionsAndAutism

Subject: Lyme in Autism and HBOT? (BorreliaMultipleInfectionsAndAutism)

Hello. I am new to this group but I have been with TACA an autism support group for years. My son now 17 was just diagnosed with Lyme. We are on the special diets, chelated, supplements, MB12 shots and on HBOT 5x weekly. Our DAN-Lyme doctor advised to stop HBOT for a year as it does something to the cells vis-à-vis the lyme. Has anyone heard this from their doctor? We are just starting allicin-garlic, D3, iodine, HH-2 and R-5081 by Zhang and 25B probiotics. We are awaiting more tests to come back on co-infections. Any advice or comment on the treatments thus far? Appreciate any help. Many tks. Fransel (son 17yrs) Fransel

Sender: BorreliaMultipleInfectionsAndAutism

Date: Sun, 23 Jan 2011 01:56:46 -0000

To: <BorreliaMultipleInfectionsAndAutism >

ReplyTo: BorreliaMultipleInfectionsAndAutism

Subject: Re: Any hopes for speech?-long

I have a non-verbal son with autism/apraxia. He will be 10 years old in about a week. We got our son an AAC device (Vantage) when he was about 5 years old. It has been extremely helpful in reducing his frustration level. It was also very helpful to have a trained speech therapist help him with the device. He now flies through it and spells items. He still has a lot to learn on it, but it was worth it. Our children need to communicate things. They get very upset when they don't think anyone doesn't understand them. Prior to that, we used PECS. We have done many things also. Diets, supplements, NAET, chelation, HBOT, etc. We have had moments of "language." We were excited and thought we were on the right track. As we continued using other approaches, he developed a reaction, which has resulted in a tic. Separately given the items were fine. When taken during the same day, the reaction was horrible. We had to stop everything. Now we are starting over slowly. Things that had worked before now aren't. It's very strange, but we also discovered he had PANDAS and HHV-6. I highly suspected Lyme (because he shows signs of Bells Palsy), but only tested positive for one band through the hospital lab. We plan on retesting him through IGENIX soon. We are currently starting another round of HBOT again. This is the only thing that had reduced his strep titers (PANDAS) significantly for him. It also has increased his "awareness" for things around him. I know you understand what I am saying. Our son still squeals and makes his own unique sounds. Other times we can get words out of him, but not too many (less than 10). I strongly feel that we are going to see some results in the speech area soon with this round of HBOT. We shall see. I hope that our story doesn't cause you to be disheartened. It is not my intention. As you said, what works for one may or may not work for another. It's just our story. We haven't given up on hope and we certainly do love him more than words can ever say. We know that our answer is out there. The missing piece of our puzzle. After many hours of research, I finally feel I'm on the right track to isolating the things that "cause" his lack of speech. Now it's a matter of finding the right treatment/(s) and in the right order. The best of luck to you and your family. Hang in there. You are on the right track.> > > > > > > > > > Can I be blunt?   This "window" doctors and some support groups have "advertised" is PURE bullshit!  I don't believe it and I never will. I am with Jeannette and . Just believe Krassi! See your son communicating, picture it in your mind...picture him healthy and happy. Just keep the viRuut...if you read this post could you PLEASE share your story with the group so the moms can get some inspiration. Hugs,Tami In a message dated 1/21/2011 2:36:04 P.M. Pacific Standard Time, klwadler@ writes:  Why do these drs feel the need to make such stupid comment? I have heard of kids starting to talk at age 16. They dont understand autism so how can they know if they will talk or not? You are doing all the right things. just keep going. I have heard that high dose vit E with fatty acids helps. For my son CalEDTA helped bcause it got rid of some lead. There is a correlation between lead and apraxia. Dont worry about the future, just keep> > going. you never know which thing is going to help.In a message dated 1/21/2011 4:18:58 P.M. Eastern Standard Time, krassi_G_2000@ writes: Hello everybody,> > This is probably going to be a long post, but I really need to share my fears and thoughts and hopefully get your opinion and experience.> > Few days ago my son got evaluated from developmental pediatrician and of course found him to be autistic. We already knew that with my husband, so nothing shocking, although 2 years ago when we went to developmental pediatrician assessment they found that my son is not autistic but with sensory disintegration disord  > > > >__________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________> > > > The message was checked by ESET NOD32 Antivirus.> > > > http://www.eset.com  __________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________  The message was checked by ESET NOD32 Antivirus.  http://www.eset.com > > > >__________ Information from ESET NOD32 Antivirus, version of virus signature database 5808 (20110122)__________> > > > The message was checked by ESET NOD32 Antivirus.> > > > http://www.eset.com> >>

[Guest guest]

My sons DAN Dr. Discourages the use for Lyme.He has seen no

positives.(He is not a LLMD).     Good luck with your choice,Tammy

F.

 

our lyme dr incouraged us to do

HBOT

 

From: franselw@...

Sent: Saturday, January 22, 2011 11:15 PM

To: BorreliaMultipleInfectionsAndAutism

Subject:

Lyme in Autism

and HBOT? (BorreliaMultipleInfectionsAndAutism)

 

Hello. I am new to this group but I have been with TACA

an autism support group for years. My son now 17 was

just diagnosed with

Lyme. We are on the special diets, chelated,

supplements, MB12 shots and on HBOT 5x weekly. Our

DAN-Lyme doctor advised to stop HBOT for a year as it

does something to the cells vis-à-vis the lyme. Has

anyone heard this from their doctor? We are just

starting allicin-garlic, D3, iodine, HH-2 and R-5081 by

Zhang and 25B probiotics. We are awaiting more tests to

come back on co-infections. Any advice or comment on the

treatments thus far? Appreciate any help. Many tks.

Fransel (son 17yrs)

Fransel

From: "diana_l_lehman"

Sender: BorreliaMultipleInfectionsAndAutism

Date: Sun, 23 Jan 2011 01:56:46 -0000

To: <BorreliaMultipleInfectionsAndAutism >

ReplyTo: BorreliaMultipleInfectionsAndAutism

Subject:

Re: Any hopes for speech?-long

 

I have a non-verbal son with autism/apraxia. He will

be 10 years old in about a week. We got our son an AAC

device (Vantage) when he was about 5 years old. It has

been extremely helpful in reducing his frustration

level. It was also very helpful to have a trained

speech therapist help him with the device. He now

flies through it and spells items. He still has a lot

to learn on it, but it was worth it. Our children need

to communicate things. They get very upset when they

don't think anyone doesn't understand them. Prior to

that, we used PECS.

We have done many things also. Diets, supplements,

NAET, chelation, HBOT, etc. We have had moments of

"language." We were excited and thought we were on the

right track. As we continued using other approaches,

he developed a reaction, which has resulted in a tic.

Separately given the items were fine. When taken

during the same day, the reaction was horrible. We had

to stop everything. Now we are starting over slowly.

Things that had worked before now aren't. It's very

strange, but we also discovered he had PANDAS and

HHV-6. I highly suspected Lyme (because he shows signs

of Bells Palsy), but only tested positive for one band

through the hospital lab. We plan on retesting him

through IGENIX soon. We are currently starting another

round of HBOT again. This is the only thing that had

reduced his strep titers (PANDAS) significantly for

him. It also has increased his "awareness" for things

around him. I know you understand what I am saying.

Our son still squeals and makes his own unique sounds.

Other times we can get words out of him, but not too

many (less than 10). I strongly feel that we are going

to see some results in the speech area soon with this

round of HBOT. We shall see.

I hope that our story doesn't cause you to be

disheartened. It is not my intention. As you said,

what works for one may or may not work for another.

It's just our story. We haven't given up on hope and

we certainly do love him more than words can ever say.

We know that our answer is out there. The missing

piece of our puzzle. After many hours of research, I

finally feel I'm on the right track to isolating the

things that "cause" his lack of speech. Now it's a

matter of finding the right treatment/(s) and in the

right order. The best of luck to you and your family.

Hang in there. You are on the right track.

> >

> >

> >

> >

> > Can I be blunt?   This "window" doctors

and some support groups have "advertised" is PURE

bullshit!   I don't believe it and I never will.  I

am with Jeannette and .  Just believe Krassi! 

See your son communicating, picture it in your

mind...picture him healthy and happy.  Just keep the

viRuut...if you read this post could you PLEASE share

your story with the group so the moms can get some

inspiration. Hugs,Tami In a message dated 1/21/2011

2:36:04 P.M. Pacific Standard

Time, klwadler@ writes:  Why do these drs feel the

need to make such stupid comment? I have heard of kids

starting to talk at age 16. They dont understand

autism so how can they know if they will talk or not?

You are doing all the right things. just keep going. I

have heard that high dose vit E with fatty acids

helps. For my son CalEDTA helped bcause it got rid of

some lead. There is a correlation between lead and

apraxia. Dont worry about the future, just keep

> > going. you never know which thing is going

to help.In a message dated 1/21/2011 4:18:58 P.M.

Eastern Standard Time, krassi_G_2000@ writes: Hello

everybody,

> > This is probably going to be a long post,

but I really need to share my fears and thoughts and

hopefully get your opinion and experience.

> > Few days ago my son got evaluated from

developmental pediatrician and of course found him to

be autistic. We already knew that with my husband, so

nothing shocking, although 2 years ago when we went to

developmental pediatrician assessment they found that

my son is not autistic but with sensory disintegration

disord  

> >

> >__________ Information from ESET NOD32

Antivirus, version of virus signature database 5808

(20110122)__________

> >

> > The message was checked by ESET NOD32

Antivirus.

> >

> > http://www.eset.com

 __________ Information from ESET NOD32 Antivirus,

version of virus signature database 5808

(20110122)__________  The message was checked by ESET

NOD32 Antivirus.  http://www.eset.com

> >

> >__________ Information from ESET NOD32

Antivirus, version of virus signature database 5808

(20110122)__________

> >

> > The message was checked by ESET NOD32

Antivirus.

> >

> > http://www.eset.com

> >

>