some results

[MrsAristotle]

I had special blood test done and have some results back, as clear as mud lol.

They were done by immunosciences Lab.

I understand that they found positive IgG Outer Surface P. A=C 1.4 Lyme antibodies (peptides)

and IgG C2 + C6 immunodominant at 2.1.

Western blot positive 41 & 66.

Although from Igenex my westernblot positve were:

igm:  23-25
31
34
39
41 ind
83-93

igg: 23-25
31
34
39
41
83-93

the other lyme antibodies it just says results reported as 2.3-2.7 index are considered equivocal, down through the page, have no idea.

So any thoughts?

I have more tests to come back, but it is surprising that the western blot by Immunosciences did not pick up the same ones as Igenex.

[gibsongal]

glad you know what you are up against and get treatment!

[Ricobord]

I am so glad that information is finally trickling in for you!  The pieces are starting to come together. I hope this gives you hope that you don't have to continue to suffer indefinitely.

You have been such an encouragement to so many people. I hope we can encourage you some, too.

[JackieCalifornia]

"I am just an odd ball lol."

And we like you!!  :)

[mojogal]

Sounds like Bart's , same symptoms as I have had. Have you had a brain MRI or Brain Spect Scan? They will tell you the lesions are MS but they are Lyme. No memory and blindness is scary..., we call it Lyme blindness and brain fog. It can get worse withou proper treatment.

[MrsAristotle]

Hi no my blindness only last about a minute, then when i went home i had the problem again, however i had a positive VEP test for ON in both eyes, and the neuro said that was the time i went blind.

I also lost my memory for 3 hours in 2007, freaky was not in it. I believe this is a symptom of lymes too. No one could explain why i lost my memory.

I was diagnosed with lympho something in my neck as my glands swell up under my neck, and no one knows why.

I am just an odd ball lol.

Thanks guys for the answers i have more tests to come back. We shall see.

[mojogal]

May I ask if you are still blind? I had periods of blindness but my vision would come back.
I have read about erlichia but never met anyone else who had it.
With my Bart's, every gland in my body is swollen and hurts. I have a bad case of it. Not every one gets that.

[Ricobord]

Wonko - I am glad you found what worked!  Your logic makes perfect sense.  I wish more doctors would follow that and try a treatment when there are no other possibilities, rather than just leave a patient miserable and without answers.

Mrs. Aristotle - I am glad you have more information. It looks like more evidence of Lyme.  I wonder if you got Ehrlichia first, and then Lyme later. I have read about Ehrlichia in mainland Europe, but I don't know about the UK. It sounds like you probably got it in Florida.

Different labs do indeed produce different results, in part because of the testing itself, and in part because antibodies to Lyme evolve over time as the spirochetes change form and also try to hide the proteins being attacked by specific antibodies. It is actually well documented that Lyme test results can be different on subsequent tests, again making it silly to conclude that a negative blood test excludes it.

This is also what makes the CDC surveillance interpretation so poor as a diagnostic tool.  It was developed using blood samples from known patients who were tested four times. If a patient met this criteria even once, then they were counted as a positive. Using statistical analysis, they determined this criteria was highly accurate for predicting Lyme, that is, it produced extremely few false ppsitives.

But if a positive patient only met the criteria once, it means they didn't meet it the other three times, which means they were false negative against the criteria 3 times out of four. They weren't concerned about that at the time as it was for surveillance (sampling) purposes. It is mind boggling that this became the diagnostic standard!  And these are the folks who claim to have "science" on their side.

The LymeMD has posted about differing results at different labs. He once posted about sending samples of a patient's blood (drawn at the same time) to 3 different labs and getting 3 very different results.  It can depend on what strain of the bacteria is used in their test kit. IGeneX compares your antibodies against two different strains, making it more likely to find Lyme specific antibodies.  For example, the LymeMD has observed that IgeneX finds more band 31 than other labs and they see it more in neuroborreliosis patients.  Since the CDC criteria was developed primarily using blood of rheumatologic patients, it makes sense to think that different genetic strains of Lyme result in different symptoms and different antibodies.

Time for antibiotics and to start your healing process!

[JackieCalifornia]

Wonks!

Glad you're still watching over us ... hope all is well with you --

Cheers J

[wonko]

I can relate to your situation because my serology was never a "slam dunk" for Lyme and co-infections.  

The western blot relies on an analytical chemistry method known as gel electrophoresis to separate proteins from a sample and requires that a human set of eyes interprets the results.  So it should not be alarming that your western blot from a different lab (and from a different blood draw) is not a perfect match.

If I were in your shoes, my next step would be to try antibiotic treatment for Lyme and Co. as prescribed by an LLMD.  I've been on MedHelp long enough to know that you've been seeking answers for a long time and that you have had many other conditions ruled out, and that is similar to what my situation was in late 2008.  I had some help from neuros for symptom control (such as neurontin to help with paresthesias and nerve pain), but I had no firm dx and was continuously being told to just "wait and see."

I decided to try antibiotics based on my personal risk/benefit analysis of my situation:  The risk of oral antibiotics seemed low relative to the possible benefit of being cured (or even improved) from my "mystery disease."  I was never confident in my Lyme blood work and was honestly rather doubtful that I had Lyme or chronic infection.  My need for a strong evidence-based scientific backing for a diagnosis went away because, regardless of my "clear as mud" testing, I started to get better with antibiotics and LLMD treatment.

Certainly I was lucky, but I'm sure you see my logic in that the risk of antibiotics was low, and no other doctor was offering any solid diagnosis or treatment plan.  I had exhausted all options through main-stream medicine, and my LLMD was offering what I saw as a fairly safe (and inexpensive) antibiotic trial.  

Best of luck moving forward and navigating your situation, I hope you find answers and relief soon.

[MrsAristotle]

Yes i had erlichia 40 when it should have been <20.

I remember now when i went to states it was 2004 in may. A few months after i was really sick was off work for 6 months was told it was stress, but i had dizzy spells, weird things going on, it all makes sense.

In 2001 though i was in brazil and went blind lol...so not sure when i got bitten.

I am a keen fisherwomen and have spent hours up our lakes in the uk where there are deer and sheep. Not sure if erlichsia is found in the UK, i know it is in dogs etc, but cant find it active in humans.

I am flaring at the moment the heat has nearly killed me and i have swollen glands.

Oh well at least this test is showing something is going on.

[mojogal]

Igenx is the one we all go by. You need to get on doxy if you are not already.
Did you take an IgenX co-infection test? If not, you really should.
With my brain fog, I am sorry that I don't remember if you told us your symptoms. I have heard from more than one ILADS LLMD that now if you are bit in the US you have one or more co-infections. As a matter of fact one of these doctors said they think Lyme is the co-infection of Bart's and babs which is what I kept thinking in my head.