Re: Positive western blot (IGM) doc says not Lyme...

[Guest guest]

Lacey:

If I am understanding you correctly you test positive IGM but not IGG. I tested

positive IGM through IGenex and negative with only one band positive on standard

main stream test. It was after 1 year of treatment that I not only became very

positive IGM (in CDC numbers now) and one band positive IGG. This was mentioned

by one of the doctors or researchers during presentations at the IOM conference

on lyme in October 2010. The person who mentioned this indicated this was not

unusual. Sorry cant remember the speaker or exact words, but it made sense to

me at the time. Western Blot tests for protein antibodies in response to your

immune system realizing its under attack.

The borrelia bacteria tricks immune system into thinking its not there. My

allergist immunologist believes I was not showing positive because the bacteria

had gone so far into tissues that my immune system was not aware it was there

until the antibioitics began to force the bacteria from my tissues. Its all

such a big fat mess in my opinion, but thought you might want to hear all

aspects to make an intelligent decision. In the world of lyme its hard to

decipher who you should believe. Unfortunate but true.

[Guest guest]

Hi Lacey,

 

  First were all the tests done by IGENEX?  Not all tests are equal and even

the best lab in the country for lyme(IGENEX) admits that diagnosis should be

done through assessment and not to rely on testing for diagnosis. Second..what

are your symptoms. 4 months of treatment is not a long time on ABX. I have been

on ABX (antibiotics) for almost two years with a steady, but up and down

improvement. Is your Dr. an LLMD(lyme literate MD) or an infectious disease

specialist. There is quite a difference in treatment plans and outcomes.

 

  Also there are many co-infections, babesia, erlychiosis, bartonella and more.

Have you been checked for any or all?

 

   Have you combined any herbal protocols with your treatment.?

 

   Last is a comment. I got much worse before I got better and did not see

sustainable improvement for 6 months. I have now rotated into Buhners protocol.

You might need more time and a different treatment plan. If you tell the group

where you are located they will help you find an LLMD if you want.

 

    Heal well,

 

        Jeff

From: laceyinbh <laceyinbh@...>

Subject: [ ] Positive western blot (IGM) doc says not Lyme...

Date: Friday, January 14, 2011, 1:13 PM

 

Does anyone have any input on this...I have been disabled for three years with

Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

Western Blot which was CDC positive for active infection. In the past year i had

several more western blots from three different labs which were all positive for

active infection only. Finally was tested last week from yet another lab and the

test was only positive for active infection. The doctor doesn't think that I'm

suffering from Lyme at this point, because the test should show a positive IGG

at this stage of the infection and I've been on four months of IV Rocephin with

almost no improvement.

The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

Thanks,

Lacey:)

[Guest guest]

that Dr is using Steere's hypothesis that Lyme is cured by a few weeks of

antibiotics and anything left over is an auto-immune response.find another

doctor. read " Cure Unknown " for info on the different theories and politics of

Lyme Disease.

~dory

From: laceyinbh <laceyinbh@...>

Subject: [ ] Positive western blot (IGM) doc says not Lyme...

Date: Friday, January 14, 2011, 1:13 PM

 

Does anyone have any input on this...I have been disabled for three years

with Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

Western Blot which was CDC positive for active infection. In the past year i had

several more western blots from three different labs which were all positive for

active infection only. Finally was tested last week from yet another lab and the

test was only positive for active infection. The doctor doesn't think that I'm

suffering from Lyme at this point, because the test should show a positive IGG

at this stage of the infection and I've been on four months of IV Rocephin with

almost no improvement.

The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

Thanks,

Lacey:)

[Guest guest]

Great reply Dory, I concur.  Jeff

From: laceyinbh <laceyinbh@...>

Subject: [ ] Positive western blot (IGM) doc says not Lyme...

Date: Friday, January 14, 2011, 1:13 PM

 

Does anyone have any input on this...I have been disabled for three years with

Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

Western Blot which was CDC positive for active infection. In the past year i had

several more western blots from three different labs which were all positive for

active infection only. Finally was tested last week from yet another lab and the

test was only positive for active infection. The doctor doesn't think that I'm

suffering from Lyme at this point, because the test should show a positive IGG

at this stage of the infection and I've been on four months of IV Rocephin with

almost no improvement.

The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

Thanks,

Lacey:)

[Guest guest]

Thank you guys, really good points.

In addition to Rocephin, I was taking knotweed and Siberian ginseng. I have a

consult set up with McIntyre next week, maybe she can put a good plan

together for me. I tried working with Tim , but his core formula is too

much for me. I need to take herbs separately.

I'm seeing an Infectious disease doc who is on our LLMD list. We really lack a

good LLMD here in L.A. I have a few Lyme friends in my area and we are all up in

the air as far as having an LLMD. We heard that a Lyme doc relocated from the

east coast to an area about an hour from where i live, so that might be

promising.

I'm hoping can help, because I'm just too spent to see more doctors who

look at me funny, because Lyme doesn't exist in Los Angeles.

>

> From: laceyinbh <laceyinbh@...>

> Subject: [ ] Positive western blot (IGM) doc says not Lyme...

>

> Date: Friday, January 14, 2011, 1:13 PM

>

>  

>

> Does anyone have any input on this...I have been disabled for three years with

Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

>

> Western Blot which was CDC positive for active infection. In the past year i

had several more western blots from three different labs which were all positive

for active infection only. Finally was tested last week from yet another lab and

the test was only positive for active infection. The doctor doesn't think that

I'm suffering from Lyme at this point, because the test should show a positive

IGG at this stage of the infection and I've been on four months of IV Rocephin

with almost no improvement.

>

> The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

>

> Thanks,

>

> Lacey:)

>

>

[Guest guest]

P.S. I was tested several times for co-infections, but only test positive for

Borrelia, all though have symptoms which resemble Bartonella.

> >

> > From: laceyinbh <laceyinbh@>

> > Subject: [ ] Positive western blot (IGM) doc says not Lyme...

> >

> > Date: Friday, January 14, 2011, 1:13 PM

> >

> >  

> >

> > Does anyone have any input on this...I have been disabled for three years

with Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

> >

> > Western Blot which was CDC positive for active infection. In the past year i

had several more western blots from three different labs which were all positive

for active infection only. Finally was tested last week from yet another lab and

the test was only positive for active infection. The doctor doesn't think that

I'm suffering from Lyme at this point, because the test should show a positive

IGG at this stage of the infection and I've been on four months of IV Rocephin

with almost no improvement.

> >

> > The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

> >

> > Thanks,

> >

> > Lacey:)

> >

> >

[Guest guest]

I also agree on the great reply Find another doctor

________________________________

From: Jeff Hickson <jeffreydhickson@...>

Sent: Fri, January 14, 2011 5:19:46 PM

Subject: Re: [ ] Positive western blot (IGM) doc says not Lyme...

 

Great reply Dory, I concur.  Jeff

From: laceyinbh <laceyinbh@...>

Subject: [ ] Positive western blot (IGM) doc says not Lyme...

Date: Friday, January 14, 2011, 1:13 PM

 

Does anyone have any input on this...I have been disabled for three years with

Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

Western Blot which was CDC positive for active infection. In the past year i had

several more western blots from three different labs which were all positive for

active infection only. Finally was tested last week from yet another lab and the

test was only positive for active infection. The doctor doesn't think that I'm

suffering from Lyme at this point, because the test should show a positive IGG

at this stage of the infection and I've been on four months of IV Rocephin with

almost no improvement.

The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

Thanks,

Lacey:)

[Guest guest]

Lacey,

Dr. in Redwood City is a very accomplished LLMD. I don't know how

close he is to you but even if he is far away, it could be well worth it to see

him. I was so ill for the first couple of years from Lyme and several

co-infections that all of my " visits " with my doctor were on the phone. And

this worked fine for me.

> >

> > From: laceyinbh <laceyinbh@>

> > Subject: [ ] Positive western blot (IGM) doc says not Lyme...

> >

> > Date: Friday, January 14, 2011, 1:13 PM

> >

> >  

> >

> > Does anyone have any input on this...I have been disabled for three years

with Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

> >

> > Western Blot which was CDC positive for active infection. In the past year i

had several more western blots from three different labs which were all positive

for active infection only. Finally was tested last week from yet another lab and

the test was only positive for active infection. The doctor doesn't think that

I'm suffering from Lyme at this point, because the test should show a positive

IGG at this stage of the infection and I've been on four months of IV Rocephin

with almost no improvement.

> >

> > The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

> >

> > Thanks,

> >

> > Lacey:)

> >

> >

[Guest guest]

Co-infections may not show up in the early stages of treatment. My first

lyme/co-infections test did not indicate a babesia infection. That showed up

after a year of treatment (with Buhner). As has been stated, the immune system

is affected by borrelia and may not fight infections that are there until some

treatment has knocked down the borrelia load. It sounds like you've gotten some

good advice here and where you live.

Its important for us to take a great deal of responsibility for our own

treatment and that includes finding information and doctors (if possible) who

can direct us correctly. Good luck in LA. You're not alone in the denial of the

existance of lyme!! jo

>

> P.S. I was tested several times for co-infections, but only test positive for

Borrelia, all though have symptoms which resemble Bartonella.

>

[Guest guest]

Having a CDC-positive IGeneX Western blot = Lyme!! You need a real

Lyme-literate doc. You can get referrals by posting at at

www.lymenet.org/flashdiscussion/seekingadoctor. Many folks with Lyme have said

they've needed almost a year on IV rocephin in order to feel better. Btw, Alan

Steere reversed himself - initially, he published papers about Lyme being a

multi-system relapsing illness. Then he aimed for the vaccine and limited his

statements. - Robin

[ ] Positive western blot (IGM) doc says not Lyme...

Date: Friday, January 14, 2011, 1:13 PM

Does anyone have any input on this...I have been disabled for three years with

Lyme type symptoms. Got Lyme diagnosis a year ago via IgeneX

Western Blot which was CDC positive for active infection. In the past year i had

several more western blots from three different labs which were all positive for

active infection only. Finally was tested last week from yet another lab and the

test was only positive for active infection. The doctor doesn't think that I'm

suffering from Lyme at this point, because the test should show a positive IGG

at this stage of the infection and I've been on four months of IV Rocephin with

almost no improvement.

The doctor thinks the infection set off another condition like autoimmune

disease or some sort of arthritis???

Thanks,

Lacey:)