confused about test results

Hi sconsetguy,

Welcome to the forum!

The problem with the tests is they function to detect antibodies to the disease. As the disease progresses, the patient's immune system gets suppressed. This skews the test results; you can get different results each time you are tested. Co-infections can affect the results as well.

There are over one hundred strains of the bacteria in the the States alone, over three hundred worldwide. The tests simply are not designed to detect all of those differences.

Many in the Lyme community see the mainstream testing as inaccurate (something to do with rabbit antibodies and not leaving the test long enough for complete results -- I'm sorry, I don't remember the complete information).

Now, you have already seen the conflicting opinions and misinformation from your doctors. Many people do not get much better from the Infectious Disease Doctors. The Infectious Disease Society of America has set up treatment guidelines and diagnosis that do not include many cases of Lyme or complete treatment for those they do treat. This is a general statement, there are exceptions, of course.

What I am getting at is that I want to encourage you to seek out a Lyme Literate Doctor. An LLMD will diagnose you according to your symptoms and history, in addition to some more accurate testing. Their treatment will be designed for your individual situation and be adjusted based on your response to treatment. This is very important as everyone responds differently. And they will treat you beyond the cessation of symptoms -- again, very important to avoid relapse. In short, the will follow the guidelines from the International Lyme and Associated Disease Society (ILADS).

For more information and resources, check out our "New to Lyme?" thread at the top of the forum. Knowledge is power!

And if you would like us to help you find an LLMD, please let us know.

Take care!

There is a section in the "New to Lyme?" thread on the significance of the bands in the test results.

It is confusing! Either way, your test is positive for lyme.

From another thread:

Somebody said...
With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.

Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.

But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.

Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.

Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.

Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.

But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM. In regard to the outer surface proteins, think of it like the skin of a human.

hi sconset guy,

i have just received similar feedback from my primary care drs regarding lyme testing after a bout of meningitis, which i was hospitalized for recently. they said it was viral, but did lyme testing, which they said the short test?? came back positive, and the longer one came negative. and when i called for a second opinion/translation of the results, the dr said he consulted with the infectious disease dr (who is supposed to be the local lyme specialist? - we're in western mass) and he said that i showed previous/old lyme exposure, but i don't need any more testing, and don't have anything to worry about?! huh?

just wondering what happened with your situation? did you find a lyme doctor? do you have any symptoms? do you know what type of testing i should have? i would be so grateful if you could help me with info....

thanks.

hi Summer3,

thanks so much for your reply. the thing is, i actually don't have any symptoms right now. i feel totally healthy and am functioning very well right now....good fitness level, etc. it just happened that about a month ago, i got sick with what i thought was a virus, and 3 days later, i had excruciating pain in my head that was only getting worse - and i couldn't move. went to the ER and they did a spinal tap and bloodwork. was admitted for a few days. i started to improve greatly the first night before i was ever started on antibiotics, which eventually they started and took me off of because they assumed from how i was progressing that i had a viral meningitis. it took me a good couple weeks for the pain to completely go away, but that was without meds or anything at home. i have been well since then. but they told me recently that my labwork showed that i showed 'old lyme exposure' and that i didn't need to worry about any more testing, etc.

so if i have no symptoms currently, should i still pursue further testing?

thanks again.

hi,

i am hoping someone can give me some names of LLMDs in Massachusetts. we are in Western Mass, but are willing to travel up to 2-3 hrs for the best possible care and attention.

thank y'all again.

thanks, achievinggrace!

thank you for your reply sconsetguy.

would you mind sending me an email with your doctors name, just in case he/she is covered by my insurance.

thank you for your help.