Confusing test results

hello and welcome to the forum

testing and interpretation for Lyme disease gets pretty complex pretty fast

the bullet point version is as follows

#there is a schism in the medical world on Lyme disease - and in chronic Lyme disease in particular

#the CDC and the infections disease association of America IDSA ( which includes almost all conventional western infectious disease doctors) are one group on one side of the argument - who do not believe chronic lyme exists. On the other side there are Lyme literate doctors LLMD's) who diagnose and treat patients and are normally members of ILADS - International Lyme and Associated Disease Society - they believe it exists - can be diagnosed mainly on symptoms and can be treated with antibiotics - but that long courses and combinations of 2 or more abx are often needed

#the two groups disagree on the accuracy of testing and how tests should be interpreted and the waters have become exceedingly muddied in the mainstream as a result. The CDC believes testing is largely accurate and treatment 3-4weeks of a single antibiotic adequate. LLMD's believe testing is often false or of poor sensitivity and treatment is very challenging many persons.

#where the story starts to become truly incredible is the sheer volume of peer reviewed high quality scientific article published that show that the sensitivity of antibody based testing is demonstrated to be low - it misses between 20% and 80% of cases of infection with Lyme depending on the paper your read, test used, strain of Lyme bacteria etc etc

back to your specifics:

i have not come across the "Progressive Lyme antibody test" before
so i am not sure how to advise on that
a quick google did not pull anything useful up
can you tell me what company performed the test?

the western blot is probably around 50% sensitive - depending on the interpretation criteria used and other factors - this means it misses approx. half the people infected with Lyme

there are also more lyme like organisms being recognised in the wild and in people - that the western blot does not pick up - eg Tick born relapsing fever group spirochetes

probably the best advice would be to find a LLMD and book an appointment

if you start a thread with the title

"Help me find a LLMD in XXXX" putting your state in place of the X's - others will be along to help

OK - thanks for the additional information

it looks like the Progressive antibody test is just a regular antibody test
and since it was positive they then went on to do a confirmatory blot test as per the two tier approach.


see info on their site below

"Question 4. What tests to assist in the diagnosis of Lyme disease are available at Quest?
Serologic testing is the principal means of laboratory diagnosis of Lyme disease. Quest offers testing in accordance with the Centers for Disease Control and Prevention (CDC) guidelines for early/acute Lyme testing.3 When laboratory diagnosis is indicated, current recommendations include using a 2-tier testing approach that begins with a sensitive enzyme immunoassay (EIA), followed by a confirmatory immunoassay for specimens yielding positive or equivocal results.3 In the standard 2-tier test (STTT) algorithm, a Western blot or immunoblot assay is used for confirmation. However, on July 29, 2019, the US Food and Drug Administration (FDA) cleared several Lyme disease serologic assays with new indications for use, which allowed an EIA (rather than immunoblot assay) to be used as the confirmatory test in a modified 2-tier testing (MTTT) algorithm.3 The MTTT algorithm is now considered an acceptable approach for the serologic diagnosis of Lyme disease and may be able to assist in the identification of early Lyme disease within the first 30 days of infection.3"

this is the standard approach to test for lyme disease with serologic methods ( methods relying on antibodies)
but the two tier approach is actually still poor in sensitivity - as per my earlier explanation -
its still used as there is so far nothing that's really any better - and the factions continue to argue over the results / interpretations

for info - the body makes ( or is supposed to make ) several different antibodies to different parts of infecting organisms to mark them for attack by other parts of the immune system.

typically the initial lyme antibody test just looks for antibodies to a particular part of a single protein on the surface of the bacteria - and the western blot looks for antibodies to a larger range of full proteins - so its possible for one to be positive and the other to be negative.

be aware - with these results your regular PCP will be trained to tell you that you do not have lyme disease - and will also not normally be open to referring you to a LLMD - as typically these to factions do not work together.

you will likely need to find a lyme literate doctor independently (eg with help from people here )

OK

feel free to ask questions

Welcome to the forum!

Garzie gave you a good overview.

Long story short, a specialist in tick-borne disease (LLMD) would consider you positive for tick-born disease, based on both your testing and symptom history. Other types of physicians lack the proper experience and training to diagnose and treat chronic tick-borne illness, so they will not be able to help you manage this aspect of your health.

Keep in mind that diagnoses like fibromyalgia, migraines, and chronic fatigue syndrome are just descriptions of symptoms - symptoms that were triggered by something, such as an infection or other trauma to the system. Treatment focuses on suppressing symptoms but not resolving or even identifying underlying causes. Many of us here have those diagnoses as well, and many of us find that treating underlying infections allows those conditions to resolve. Sometimes we have to treat from many angles to make progress - infections, the gut, the immune system, the nervous system, diet, stress, etc.

Once you have chronic illnesses like the ones you mentioned (regardless of the initial triggers) your PCP probably isn't going to be a great resource, try as they might. Functional and integrative medicine tend to be the specialties that can look into dysfunction in all of your body's systems and help figure out how to recalibrate and heal what's wrong.

I hope you find the help that you need and experience relief soon!