Re: Totally OT-need some help

[Guest guest]

Hey Terry- I don't think this is too far off-topic. I really wish I had some

sound advice for you, but I don't know much about PANDAS or Lyme. However, you

should DEFINITELY post this question on pecanbread. Those parents are doing SCD

and they have so much to share on many other topics. I remember them talking in

depth about PANDAS once. I bet they can give you some great advice!

-Joanna

>

> Hi Guys,

>

> I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

>

> Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The

nurse I spoke to said he will now be on it for 3 months for the Lyme. I am

giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic

on top of that. Anyone have an opinion?

>

> I also have read about laurocidin and I was wondering if anyone know anything

about it and does it work? I vaguely remember it being discussed here. The

reason I am asking you all is because I trust the opinions and knowledge on this

forum. Any help would be gratefully appreciated.

>

> If this is too OT, please feel free to email me off list.

>

> Thanks,

> Terry

>

[Guest guest]

You should email jodi offlist - just in case she is not checking in with this

daily. She's our big expert on Lyme.

Very sorry to hear about this, Terry - Lyme is a nightmare. But at least there

is hope he can get better now.

Mara

> Hi Guys,

>

> I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

>

> Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The

nurse I spoke to said he will now be on it for 3 months for the Lyme. I am

giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic

on top of that. Anyone have an opinion?

>

> I also have read about laurocidin and I was wondering if anyone know anything

about it and does it work? I vaguely remember it being discussed here. The

reason I am asking you all is because I trust the opinions and knowledge on this

forum. Any help would be gratefully appreciated.

>

> If this is too OT, please feel free to email me off list.

>

> Thanks,

> Terry

>

>

>

> ------------------------------------

>

>

[Guest guest]

Thanks Mara. I am blown away by the news today. The only thing I am truly glad

about is I think we are finally in good hands. Jay is tentatively scheduled to

start IVIG next month and I am cautiously optimistic that he can improve.

Terry

>

> > Hi Guys,

> >

> > I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

> >

> > Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The

nurse I spoke to said he will now be on it for 3 months for the Lyme. I am

giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic

on top of that. Anyone have an opinion?

> >

> > I also have read about laurocidin and I was wondering if anyone know

anything about it and does it work? I vaguely remember it being discussed here.

The reason I am asking you all is because I trust the opinions and knowledge on

this forum. Any help would be gratefully appreciated.

> >

> > If this is too OT, please feel free to email me off list.

> >

> > Thanks,

> > Terry

> >

> >

> >

> > ------------------------------------

> >

> >

[Guest guest]

Thanks Joanna--

Terry

> >

> > Hi Guys,

> >

> > I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

> >

> > Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The

nurse I spoke to said he will now be on it for 3 months for the Lyme. I am

giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic

on top of that. Anyone have an opinion?

> >

> > I also have read about laurocidin and I was wondering if anyone know

anything about it and does it work? I vaguely remember it being discussed here.

The reason I am asking you all is because I trust the opinions and knowledge on

this forum. Any help would be gratefully appreciated.

> >

> > If this is too OT, please feel free to email me off list.

> >

> > Thanks,

> > Terry

> >

>

[Guest guest]

Hi Terry,

I don't have personal experience with Lyme. I just wanted to let you know how

sorry I was to hear that you and your son are struggling with this. I am glad

your doctor was so thorough to keep at finding this.

I am not familiar with Lauricidin. I do hope others on this board can be more

helpful. I hope with the antibiotics that your son makes a quick recovery.

Please keep me posted.

PJ

>

> Hi Guys,

>

> I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

>

> Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The

nurse I spoke to said he will now be on it for 3 months for the Lyme. I am

giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic

on top of that. Anyone have an opinion?

>

> I also have read about laurocidin and I was wondering if anyone know anything

about it and does it work? I vaguely remember it being discussed here. The

reason I am asking you all is because I trust the opinions and knowledge on this

forum. Any help would be gratefully appreciated.

>

> If this is too OT, please feel free to email me off list.

>

> Thanks,

> Terry

>

[Guest guest]

Terry,

I’m sorry to hear of your son’s illnesses.

I have used Lauricidin and I love that product! During the H1N1

flu season, during which dh got that flu, I took Lauricidin every day (3x/day)

and never got the flu. I have also used it against candida, with good results. The

dosage is easily adjustable as the product is in tiny Styrofoam-like pieces and

you just measure out how much you take. There is a teaspoon provided and you

take a portion of the teaspoon or the whole thing – I worked my way up

from ¼ tsp. 3x/day to a full teaspoon 3x/day. Powerful stuff.

Here is a list of bacteria, viruses & fungus that Lauricidin

kills (at least in a petri dish in a lab):

http://www.lauricidin.com/micro.asp

However, I don’t see the Lyme disease causing Borrelia  species

listed.

I hope you can find help for your son…geez, it’s

always something. Hang in there.

Carol

CD 22 yrs  SCD 5 yrs

From:

BTVC-SCD [mailto:BTVC-SCD ] On Behalf Of terry.belle

I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The nurse

I spoke to said he will now be on it for 3 months for the Lyme. I am giving him

the 24 hr yogurt daily. I don't know if I should give him a probiotic on top of

that. Anyone have an opinion?

I also have read about laurocidin and I was wondering if anyone know anything

about it and does it work? I vaguely remember it being discussed here. The

reason I am asking you all is because I trust the opinions and knowledge on

this forum. Any help would be gratefully appreciated.

[Guest guest]

At 10:54 PM 7/15/2010, you wrote:

I am blown away by the news

today. The only thing I am truly glad about is I think we are finally in

good hands. Jay is tentatively scheduled to start IVIG next month and I

am cautiously optimistic that he can improve.

Terry,

At least now you know what the issues are, and can formulate a plan of

treatment. (Not to mention researching so you know what the heck is going

on!)

—

Marilyn

New

Orleans, Louisiana, USA

Undiagnosed IBS since 1976, SCD since 2001

Darn Good SCD Cook

No Human Children

Shadow & Sunny Longhair Dachshund

Babette the Foundling Beagle

[Guest guest]

Terry wrote:

I apologize that this is totally OT. I told you my son was diagnosed with PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an immunologist/allergist. We tested for Lyme as well, came back negative by the local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just found out that my poor son also has Lyme. We never would have known if this Dr. hadn't been so thorough.Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The nurse I spoke to said he will now be on it for 3 months for the Lyme. I am giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic on top of that. Anyone have an opinion?I also have read about laurocidin and I was wondering if anyone know anything about it and does it work? I vaguely remember it being discussed here. The reason I am asking you all is because I trust the

opinions and knowledge on this forum. Any help would be gratefully appreciated.If this is too OT, please feel free to email me off list. Thanks, Terry

================================================================================Dearest One Terry

I will send you SCDiet Pals w/Lyme Disease to talk with who have been one the SCDiet over a year to help you with their experiences with theLyme Disease and medicines.

Look in your junk or spam mail for the information because you do not have my email addresses in your contact mail.

___________________________________________________Loving Care Grammy Gay Surgery '75, CD '94,SCD '97, No meds. '98 SCDâ„¢Stores: http://www.SCDiet.net/ Moderator Indy, IN

hebegb70@... or grammy_bauer@...

Breaking The Vicious Cycle by Elaine GottschallTell me where you live to find SCD Pals, Drs. how

long on the SCDiet.

Put in Subject: SCD or I may not see your post to me.

[Guest guest]

I almost did that with my daughter IVIG -she has OCD and crazy high strep titers

without having had strep as far as I knew - I did a couple rounds of antibiotics

- glad I stopped now that I know so much scd wise but didn't see major

improvement - except for ERP therapy and good old fashioned power of prayer -

she's 90% better now

thank God

Good luck - don't know that this is your sitaution but thougt I'd share

eileen

> >

> > > Hi Guys,

> > >

> > > I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

> > >

> > > Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The

nurse I spoke to said he will now be on it for 3 months for the Lyme. I am

giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic

on top of that. Anyone have an opinion?

> > >

> > > I also have read about laurocidin and I was wondering if anyone know

anything about it and does it work? I vaguely remember it being discussed here.

The reason I am asking you all is because I trust the opinions and knowledge on

this forum. Any help would be gratefully appreciated.

> > >

> > > If this is too OT, please feel free to email me off list.

> > >

> > > Thanks,

> > > Terry

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > >

[Guest guest]

Terry,

I'm so sorry you are all up against so much! I don't know anything

really about the Zithromax, but my off-the-cuff opinion is that it

wouldn't hurt a bit to give him some extra pro-biotics along with the

yogurt, which I would try to have him take several times a day. I

don't see how it could hurt and as we all know, antibiotics do need lots

of pro-biotics, particularly, I would think, taking them for three

months.

I hope it helps and that he's feeling a lot better soon.

> Hi Guys,

> > I apologize that this is totally OT. I told you my son was

diagnosed with PANDAS. It has been a 3 year journey to get him diagnosed.

The Dr. we saw is an immunologist/allergist. We tested for Lyme as well,

came back negative by the local Lifespan lab. Dr. B wanted him retested

by a lab in CA; IgeneX. I just found out that my poor son also has Lyme.

We never would have known if this Dr. hadn't been so thorough.

> > Jay, my son, is currently on Zithromax 250 mg twice a day for

PANDAS. The nurse I spoke to said he will now be on it for 3 months for

the Lyme. I am giving him the 24 hr yogurt daily. I don't know if I

should give him a probiotic on top of that. Anyone have an opinion?

> > I also have read about laurocidin and I was wondering if anyone

know anything about it and does it work? I vaguely remember it being

discussed here. The reason I am asking you all is because I trust the

opinions and knowledge on this forum. Any help would be gratefully

appreciated.

> > If this is too OT, please feel free to email me off list.

> > Thanks,

> Terry

[Guest guest]

Thanks all for your kind responses and support.

I will have to call the makers of Lauricidin to see if it covers Lyme, thanks, Carol for seeing that.

As Marilyn said, now we can make a treatment plan and we will have to take it one day at a time.

My little Jay is quite a trooper. We have talked about the fact that everything he has gone through will make him a stronger person who can navigate through life a little better.

If anyone has any suggestions or comments, I will always appreciate the help.

Thanks,

Terry

[Guest guest]

Someone suggested I get checked for lyme and the Dr did a western blot test but

ony 1 band showed positive (41) so wondered then what else I fighting, is the

Igenx test more accurate?

can someone get lyme then get well?

Thanks

Lynn D

> >

> > > Hi Guys,

> > >

> > > I apologize that this is totally OT. I told you my son was diagnosed with

PANDAS. It has been a 3 year journey to get him diagnosed. The Dr. we saw is an

immunologist/allergist. We tested for Lyme as well, came back negative by the

local Lifespan lab. Dr. B wanted him retested by a lab in CA; IgeneX. I just

found out that my poor son also has Lyme. We never would have known if this Dr.

hadn't been so thorough.

> > >

> > > Jay, my son, is currently on Zithromax 250 mg twice a day for PANDAS. The

nurse I spoke to said he will now be on it for 3 months for the Lyme. I am

giving him the 24 hr yogurt daily. I don't know if I should give him a probiotic

on top of that. Anyone have an opinion?

> > >

> > > I also have read about laurocidin and I was wondering if anyone know

anything about it and does it work? I vaguely remember it being discussed here.

The reason I am asking you all is because I trust the opinions and knowledge on

this forum. Any help would be gratefully appreciated.

> > >

> > > If this is too OT, please feel free to email me off list.

> > >

> > > Thanks,

> > > Terry

> > >

> > >

> > >

> > > ------------------------------------

> > >

> > >