Re: Hi, I'm new to the group and diagnosis

[Guest guest]

Hi Jan

Happy Holidays,

I know that is hard right now but there is light at the end of the

tunnel. There may not be too many people on the boards right now.

But I assure you that you will find many kind and caring people here.

There is also Lymenet.org which is based in New Jersey.

There you will see a great link for " Newbies " under the Flash

section that will prove very helpful to you. Also, If you are

looking for another large support group.

You can also find Helpful links on my website www.juliashbot.com and

at www.wildcondors.com

I have lyme since August of 2000. So far I can say that it is in

remission. However, whenever someone sneezes in my direction. I have

to take aggressive measures to boost my immune system... There are

still some lingering side effects but for the most part I can say

that I am okay, especially Neurologically..

I'm in Basking Ridge, NJ. This is the lyme and Bartonella capital

In case you didn't know it. So I hope that you have been checked for

co infections and also for heavy metal toxicity.

Most people in our society walk around with loads of metals in there

system and don't even know it. It will hinder greatly your ability

to heal now that metal toxicity will render most antibiotics

ineffective.. (google it)

I wanted to welcome you and to let you know that if you ever have

any questions on Hyperbaric Oxygen I will do my best to answer your

questions. I offer the sessions very affordably to lymies : ))

Please feel free to contact me with any questions. You will find my

number on my web site.

Blessings to you and your family,

>

> Hi Everybody,

>

> I live in Monmouth Co. NJ. I was just diag. with late Lyme

> 12/12/06. I suspected I had Lyme years ago and was tested 3x's

and

> it was negative. Too many diagnoses of too many different

systems,

> so I knew there was something behind it all.

>

> Recently an online friend sent me info and thru it I learned about

> IGeneX and LLMD's. I looked at www.CanLyme.com and saw 5 of my

> diagnoses listed and I was misdiag. with MS. (I should have

looked

> into it when my sis and bil were diag that way. Sis has been

treated

> and is doing well. I am seeing her LLMD and she's close to

me. ))

>

> I am on Prima Una de Gato and other supplements. I am on many

meds

> for my other ailments that Lyme caused. My LLMD said she will get

> rid of the Lyme so it can't cause me anymore problems, but the

damage

> is done. ( She said some things will improve.

>

> I have Inappropriate Sinus Tachycardia, Neurocardiogenic Syncope,

> Inflammatory Bowel Disease, Interstitial Cystitis, Raynaud's,

> Costochondritis, Brain lesions, kidney lesions, and the list goes

on

> a bit. Of course these are Lyme just mimicking these conditions.

>

> I hope I can keep up with the group as I am spread thin with

others.

>

> jan

>

[Guest guest]

Hi ,

I figured it would be slow giving the Christmas season.

I am in Howell. I did have the co-infections tests done. I didn't

have a heavy metal test done. I'll ask about it at my next appt.

Right now I am not on antibiotics. I am taking Prima Una de Gato.

I think I am herxing. Last night was bad with muscle spasms and my

eyelids and hands were warm. Then my hands went to an uncomfortable

hot and my arms got warm. My lower back and hips hurt, and my heels

have been hurting. I feel the tightness of my shoulders even though I

take a muscle relaxer (my chiro said I am very tight).

I will visit Lymenet.org and check it out and add the other links to

my Lyme folder in favs. Thanks.

When you say you had Lyme since 2000, do you mean you started

treatment then or that you got it then and started treatment later?

I had the rash 10 yrs. ago, but thought a bull's eye would look like

a target, having a few rings, not just one. I am so sorry I didn't

go to the drs. then, I kept telling myself I should. *sigh* Yet, I

may have had Lyme longer, because some of the symptoms I have had

longer.

My hubby has been bitten by many tics of all kinds over the years,

but just recently he was bit by prob a wood tick. He pulled it out,

but the head stuck and got infected. Since then he is having

headaches, backaches, and upset stomach. I ordered his test from

IGeneX, I should get it early next week.

Some say that you can't completely get rid of the bb and others say

you can. What is your opinion or do you know what is actually true?

Merry Christmas!

jan

>

> Hi Jan

>

> Happy Holidays,

>

> I know that is hard right now but there is light at the end of the

> tunnel. There may not be too many people on the boards right now.

> But I assure you that you will find many kind and caring people

here...

[Guest guest]

,

I couldn't find the Newbies on the Flash. I did a search, but it had

way too many results. Would you mind getting the direct link for me?

jan

> There is also Lymenet.org which is based in New Jersey.

>

> There you will see a great link for " Newbies " under the Flash

> section that will prove very helpful to you. Also, If you are

> looking for another large support group.

[Guest guest]

Welcome, Jan.

Alas, there are many of us with very late diagnosis here. Best

wishes on maximum improvement!

>

> Hi Everybody,

>

> I live in Monmouth Co. NJ. I was just diag. with late Lyme

> 12/12/06. I suspected I had Lyme years ago and was tested 3x's

and

> it was negative. Too many diagnoses of too many different

systems,

> so I knew there was something behind it all.

>

> Recently an online friend sent me info and thru it I learned about

> IGeneX and LLMD's. I looked at www.CanLyme.com and saw 5 of my

> diagnoses listed and I was misdiag. with MS. (I should have

looked

> into it when my sis and bil were diag that way. Sis has been

treated

> and is doing well. I am seeing her LLMD and she's close to

me. ))

>

> I am on Prima Una de Gato and other supplements. I am on many

meds

> for my other ailments that Lyme caused. My LLMD said she will get

> rid of the Lyme so it can't cause me anymore problems, but the

damage

> is done. ( She said some things will improve.

>

> I have Inappropriate Sinus Tachycardia, Neurocardiogenic Syncope,

> Inflammatory Bowel Disease, Interstitial Cystitis, Raynaud's,

> Costochondritis, Brain lesions, kidney lesions, and the list goes

on

> a bit. Of course these are Lyme just mimicking these conditions.

>

> I hope I can keep up with the group as I am spread thin with

others.

>

> jan

>

[Guest guest]

Hi Jan,

Here is the Link: )

http://flash.lymenet.org/ubb/ultimatebb.php?

ubb=get_topic;f=1;t=029917

You will find it by going to flash discussions, click on Medical

Questions, this is where you will find everyone hanging out most of

the time LOLOL : )

Blessings,

>

> > There is also Lymenet.org which is based in New Jersey.

> >

> > There you will see a great link for " Newbies " under the Flash

> > section that will prove very helpful to you. Also, If you are

> > looking for another large support group.

>

[Guest guest]

It sounds like you may be herxing. Sorry that you have to spend your

Christmas this way but in the long run it is a good thing now that

you are killing the spifochetes.

I have lyme since I moved into County. It took two years to

get a definitive dx... Oh brother! I tested negative five times

through the conventional labs. Finally when I found a good LLMD I

was dx with lyme and bartonella.

I hope that your husband tests are negative. I wouldn't wish this on

anyone... I don't believe that you can cure lyme. I believe it can

be put into remission. And then you learn to live around it )

I believe that it can go into a cyst form and just like syphilis it

stays with you. Waiting for your imunne system to become weakened to

a point where it can take hold. But that's a questions that can only

be answered with a boat load of research and funding.

I hope that you have a very Merry Christmas close to those you

love...

Blessings,

> >

> > Hi Jan

> >

> > Happy Holidays,

> >

> > I know that is hard right now but there is light at the end of

the

> > tunnel. There may not be too many people on the boards right

now.

> > But I assure you that you will find many kind and caring people

> here...

>

[Guest guest]

BTW, What Abx are you taking? IV or Orals and how long have you been

on them?

: )

>

> > There is also Lymenet.org which is based in New Jersey.

> >

> > There you will see a great link for " Newbies " under the Flash

> > section that will prove very helpful to you. Also, If you are

> > looking for another large support group.

>

[Guest guest]

Thank you. I wish the same for all and I am praying for it, for us all,

too.

>

> Welcome, Jan.

> Alas, there are many of us with very late diagnosis here. Best

> wishes on maximum improvement!

>

[Guest guest]

Thank you, I really appreciate it.

jan

>

> Hi Jan,

>

> Here is the Link: )

>

> http://flash.lymenet.org/ubb/ultimatebb.php?

> ubb=get_topic;f=1;t=029917

>

> You will find it by going to flash discussions, click on Medical

> Questions, this is where you will find everyone hanging out most of

> the time LOLOL : )

>

> Blessings,

>

>

[Guest guest]

I'm not on abx, I'm taking Cat's Claw. I just started 12/13 and am

titrating, this Weds. I will be taking 3.

I did start on abx (doxy) prior to seeing an LLMD with my PCP and I

took them about 1 1/2 mos. I herxed then, too. But he read my IGeneX

test as neg. fortunately I knew to get copies. I had positive

antibodies and a couple of Indeterminates in the right places. I had

been on abx for 3 wks when my blood was drawn. I read, too, that late

Lyme often comes back indeterminate.

jan

>

> BTW, What Abx are you taking? IV or Orals and how long have you been

> on them?

>

> : )