Testing...insanity

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

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.

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?

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.

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!

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.

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 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.

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

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.