Testing...insanity

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sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/29/2017 4:41 PM (GMT -6)   
so, once again get a negative result today with my PCR test. so,

7/2016 Lyme Profile ELISA - negative (Lyme Ab (IgG + IgM) .82, Lyme IgM Ab .32)
8/2016 WB - Negative (two bands, p41 igg and p23 igm only)
8/2017 WB - Negative (two bands, p41 Igg and p23 igm only)
12/2017 PCR - Negative

just to help my sanity, this is normal with lyme testing. I expect to have igenex results in a week or so for another data point or comparison.

trying to rationalize this, but the lack of certainty drives up my anxiety..but i assume this is normal with lack of good testing. thanks a lot

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/29/2017 4:45 PM (GMT -6)   
Totally normal. My GP gave me the Elisa and would not do a WB because the Elisa was negative.

Oh well.....

Just wait for the Igenex.

And try not to be anxious. Lyme loves it when you get anxious. It gets to grow and flourish because of it. Deep breaths and be calm.

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/29/2017 4:52 PM (GMT -6)   
Thanks PeteZa. I had to fight with my GP each and every time for these tests.

Not sure how to react to the Igenex test. positive or negative result.

regardless still working on trying to get into an LLMD, that part has been difficult just even scheduling. Hopefully that can happen this month. oh well, not much else i can do with it this weekend anymore.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/29/2017 5:04 PM (GMT -6)   
sierra710 said...
so, once again get a negative result today with my PCR test. so,

7/2016 Lyme Profile ELISA - negative (Lyme Ab (IgG + IgM) .82, Lyme IgM Ab .32)
8/2016 WB - Negative (two bands, p41 igg and p23 igm only)
8/2017 WB - Negative (two bands, p41 Igg and p23 igm only)
12/2017 PCR - Negative

just to help my sanity, this is normal with lyme testing. I expect to have igenex results in a week or so for another data point or comparison.

trying to rationalize this, but the lack of certainty drives up my anxiety..but i assume this is normal with lack of good testing. thanks a lot


You really don't need more testing - band 23 is Lyme specific.
And you had it show up twice - a year apart.

A LLMD should accept that test with your symptoms and treat.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Post Edited (Girlie) : 12/29/2017 4:45:24 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/29/2017 5:06 PM (GMT -6)   
sierra710 said...
Thanks PeteZa. I had to fight with my GP each and every time for these tests.

Not sure how to react to the Igenex test. positive or negative result.

regardless still working on trying to get into an LLMD, that part has been difficult just even scheduling. Hopefully that can happen this month. oh well, not much else i can do with it this weekend anymore.


Have you not been seeing a LLMD since your test in August 2016 for treatment?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/29/2017 5:12 PM (GMT -6)   
Unfortunately no i have not, i made poor decision and tried to resolve thru my hospital health network. and got no where. I am just starting now...

thanks for the confirmation about these results.

i am now trying to schedule with LLMD, called 3 of them this week. unfortunately no one is in this week due to the holidays. I will be on them first thing tuesday.

I did manage to get doxy from a new primary care, however its just the 100mg 2x dosage...not sure if that is anything that will even help me until i get in to LLMD.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/29/2017 5:33 PM (GMT -6)   
sierra710 said...
Unfortunately no i have not, i made poor decision and tried to resolve thru my hospital health network. and got no where. I am just starting now...

thanks for the confirmation about these results.

i am now trying to schedule with LLMD, called 3 of them this week. unfortunately no one is in this week due to the holidays. I will be on them first thing tuesday.

I did manage to get doxy from a new primary care, however its just the 100mg 2x dosage...not sure if that is anything that will even help me until i get in to LLMD.


Since it's now been a year and a half...I don't know if it's going to help - make much difference to take the 100mg dosage twice daily - especially if it's just for a couple of weeks.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/29/2017 5:39 PM (GMT -6)   
thanks I figured. my hope is that i can still get this under control. i hope that i can, its possible.

hopefully one of the LLMDs will expedite my appointments.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/29/2017 5:47 PM (GMT -6)   
sierra710 said...
thanks I figured. my hope is that i can still get this under control. i hope that i can, its possible.

hopefully one of the LLMDs will expedite my appointments.


I know many cases (including forum members) who have healed, are in remission and had chronic Lyme.
YES, it is possible!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/29/2017 6:14 PM (GMT -6)   
Thank you. I need hope, in a big way.

I want my life back, it seems so far away. but i know i can get there

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/29/2017 6:36 PM (GMT -6)   
sierra710 said...
Thank you. I need hope, in a big way.

I want my life back, it seems so far away. but i know i can get there


I think the key is persistence. Don't give up....it can be a long (very long), arduous journey.
And, sometimes people just give up after a year...or two.


I know a lady in my neck of the woods who treated for 3 1/2 years before she reached remission.
She has been symptom free now for about 2 years.

Just think if she had given up at the 3 year mark?

The Ranger in Under Our Skin documentary - it took him a long time...was it 5...or maybe it was 8 years before he was healed.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/29/2017 7:00 PM (GMT -6)   
thanks, i will keep it up for sure. i feel there is no other option.

i am reasonably healthy. i eat right (mostly organic/non-gmo) and have been active, other than when i am down from the lyme. i am hoping this helps my overall position.

also, in comparison i have a lot of symptoms, but majority of them are mild symptoms. i hope that speaks to how far it is rooted. I know some people are probably much worse off

greatguy
Regular Member


Date Joined Dec 2017
Total Posts : 104
   Posted 12/30/2017 2:02 PM (GMT -6)   
Girlie said...
sierra710 said...
Thank you. I need hope, in a big way.

I want my life back, it seems so far away. but i know i can get there


I think the key is persistence. Don't give up....it can be a long (very long), arduous journey.
And, sometimes people just give up after a year...or two.


I know a lady in my neck of the woods who treated for 3 1/2 years before she reached remission.
She has been symptom free now for about 2 years.

Just think if she had given up at the 3 year mark?

The Ranger in Under Our Skin documentary - it took him a long time...was it 5...or maybe it was 8 years before he was healed.



Woah... I've watched yesterday under our skin and he said it took 5 doctors to diagnose, so i assumed he went back relatively fast(?). But 5 or even worse, 8 years? I don't remember him saying that.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/30/2017 2:03 PM (GMT -6)   
greatguy said...
Girlie said...
sierra710 said...
Thank you. I need hope, in a big way.

I want my life back, it seems so far away. but i know i can get there


I think the key is persistence. Don't give up....it can be a long (very long), arduous journey.
And, sometimes people just give up after a year...or two.


I know a lady in my neck of the woods who treated for 3 1/2 years before she reached remission.
She has been symptom free now for about 2 years.

Just think if she had given up at the 3 year mark?

The Ranger in Under Our Skin documentary - it took him a long time...was it 5...or maybe it was 8 years before he was healed.



Woah... I've watched yesterday under our skin and he said it took 5 doctors to diagnose, so i assumed he went back relatively fast(?). But 5 or even worse, 8 years? I don't remember him saying that.


Did you follow it up with the Sequel - Emergence? He wasn't healed yet in the first documentary, right?
So, it would be the sequel where he mentions it...if I'm remembering correctly.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

greatguy
Regular Member


Date Joined Dec 2017
Total Posts : 104
   Posted 12/30/2017 2:57 PM (GMT -6)   
Girlie said...
greatguy said...
Girlie said...
sierra710 said...
Thank you. I need hope, in a big way.

I want my life back, it seems so far away. but i know i can get there


I think the key is persistence. Don't give up....it can be a long (very long), arduous journey.
And, sometimes people just give up after a year...or two.


I know a lady in my neck of the woods who treated for 3 1/2 years before she reached remission.
She has been symptom free now for about 2 years.

Just think if she had given up at the 3 year mark?

The Ranger in Under Our Skin documentary - it took him a long time...was it 5...or maybe it was 8 years before he was healed.



Woah... I've watched yesterday under our skin and he said it took 5 doctors to diagnose, so i assumed he went back relatively fast(?). But 5 or even worse, 8 years? I don't remember him saying that.


Did you follow it up with the Sequel - Emergence? He wasn't healed yet in the first documentary, right?
So, it would be the sequel where he mentions it...if I'm remembering correctly.


Yeah, it seems he was treating it at least 5 years, which is, i don't know, CRAZY?!? 5 freaking years, what kind of insurance company payed for that? I hope at best for 1 or 2 years, else i'll run out of cash.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/30/2017 3:44 PM (GMT -6)   
That's the crime. Many people go broke treating this disease. Not just because of the cost of treatment, but often we can't work for many years.
Loss of income has been my biggest financial drain.

I'm past the 3 year mark now.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/30/2017 3:49 PM (GMT -6)   
i just had to start my medical leave. I had hopes it would be a for a few months, but it sounds like it will likely be much longer than that.

i guess there is no way to gauge a 'ball park' treatment period, say for 1 year, 2 year, 3 year since infected. is there? i am at the 21 month mark - close to 2 years.

thanks

greatguy
Regular Member


Date Joined Dec 2017
Total Posts : 104
   Posted 12/30/2017 3:51 PM (GMT -6)   
This is very sad. AIDS people had this for some years, after which the pharma companies stood in at some point and they got full government support. Lyme was discovered even before AIDS and to think that it still is such a vague mystery compared to AIDS. Just makes you hate this world honestly.

sierraDon
Regular Member


Date Joined Aug 2016
Total Posts : 184
   Posted 12/30/2017 3:53 PM (GMT -6)   
I agree, its very sad state...ruining so many peoples lives.

very upsetting, my 6 year old son knows something is wrong with me, and dont know how to explain this mess to him.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32656
   Posted 12/30/2017 3:56 PM (GMT -6)   
greatguy said...
This is very sad. AIDS people had this for some years, after which the pharma companies stood in at some point and they got full government support. Lyme was discovered even before AIDS and to think that it still is such a vague mystery compared to AIDS. Just makes you hate this world honestly.


EXACTLY!

LL DR. J. used to treat Aids/HIV patients...and in fact devised the protocol for treatment - and then he switched over to lyme patients.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi
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