Tuesday, October 27, 2015

How I was Diagnosed

     Lyme disease is a tricky organism to find. Easy to contract...but a pain in the rear to locate. The tests are insensitive, and the symptoms can be hard to narrow down. I mean really, do you know how many ailments fatigue and joint pain is associated with? Its not a small number!! Fatigue can be caused by anything, insomnia, the flu, mono, hypothyroidism, a cold, cytomegalovirus, exercise, etc.
Joint pain is not as common as fatigue. Joint is usually only associated with osteo and rheumatoid arthritis, which is lyme is misdiagnosed as often.

     PCR, Western Blot, and ELISA are the most common tests utilized for diagnosing lyme disease.
Usually a doctor will order an ELISA (enyme linked immunosorbent assay) first, according to ILADS it misses 35% of culture proven lyme disease. That's a big number to just ignore. 35 out of every 100 people are told they tested negative for lyme disease, even though they are infected.

     The western blot for lyme disease is the most favorable test in the lyme community. This test detects proteins in the blood which are measured as bands. Some of these bands are extremely specific to the lyme bacteria, here is a breakdown of each individual band meanings.
Some of these single bands can prove the presence of borrelia (band 18), while most are indirect i.e. band 41.
The western blot is so popular because it can show the level of infection. Igenix specifically shows how positive each band reacted, some are low + and some are higher +++. The more + the higher the immune response towards the band. One thing Igenix does that is unique is that they show equivocal results. Equivocal is the fine line between positive and negative, something showed up on the test but not enough to call it a for sure positive.

     The PCR (polymerase chain reaction) test is also popular. PCR is very accurate but not sensitive. The infection has to be high for it to be detected, but a positive result of this test has an almost 0% occurrence of false positives. The ELISA can have false positives (though rare) and the western blot bands can be reactive to other pathogens. The PCR is not as popular as the ELISA and WB because it is more expensive and can miss new infections.

     Personally, the only thing I ever tested positive for was rocky mountain spotted fever through Quest. I was also tested through Quest for lyme (ELISA) and ehrlichia, but they always came back negative.
When I started to do my own treatment I ordered a kit through Igenix. Those tests all returned negative for babesia, bartonella, and anaplasma. A lyme EIA was equivocal and the western blot had band 41+ (ill post the results if I can find them). The EIA could be considered positive by some LLMD's, I don't think much of it.

     One of the best methods, however, is clinical diagnosis. This is when a doctor matches your symptoms to the illness, ignoring negative test results. This is also how I diagnosed myself long before any doctor told me what I did or did not have. Most people in the Lyme community will tell you to find a doctor who is capable of a clinical diagnosis. I agree with that, no blood test is 100% accurate. Doesn't matter what its looking for, mistakes can be made.

     After the Igenix results is when I returned to the ND. The ND I go to utilizes a SCIO biofeedback device. I like this device because it detects the body's reaction to so many things at once. It will also show stresses towards pathogens. My body was stressed towards RMSF, Lyme, malaria, ebv, cmv, and some parasites. Ill be darned...something actually showed up! The malaria could be a cross react with babesia, which is a cousin to malaria. That's what I am calling it anyway.
Before this, I had received 3 consecutive negative tests for RMSF, yet it showed up as a high stress right of the bat on the machine. Imagine that, my body knew it was there, my immune system just wasn't reacting anymore.

     ND's cannot officially diagnose me with anything, only MD's and DO's are legally allowed to do that. They can advise for and against supplements, but they cannot tell me I have to do something.
So they advised me to take several supplements to bring my body back into balance. This went well, but none of my symptoms ever actually ceased.
I still go to the ND. The machine can also test reactivity to supplements (like muscle testing) and if they are causing my body stress. Since I have to treat using supplements entirely, this can be an invaluable resource. I also like to see how my stresses change from month to month. I went today in fact, that will be my next post.

I hope this post offered you some clarity towards how lyme can be tested for!

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