Testing: is it even worth it?

[bspg]

My doctor wants me to have all of the specialized labs done for TBD's. My insurance won't cover ANY of the testing so it'd be a huge chunk of change out of pocket. Like, thousands of dollars.

With all the controversy over TBD testing (and treatment) is it even worth getting tested? I don't recall ever being bit by a tick. My 'standard testing' results came back equivocal for Ehrlichia IgG but nothing else.

Thoughts?

 

[Aubry]

I hear many people recover with TBD treatments so maybe it is worth?

 

[Cheesus]

Which tests specifically are they recommending you get?

I went through this same dilemma, and decided in the end it wasn't worth it. I simply couldn't find any convincing evidence that the commercial tests are at all valid or reliable. A test with unknown reliability is worse than getting no testing at all, because it may lead you down an unnecessary treatment pathway with its own risk and expense.

 

[Martin aka paused||M.E.]

Isn't the ELISA test reliable? If not, then why?
The german Robert-Koch-Institut says ELISA is the first stage of testing. Only if this one is positive then you have to be tested if the infection is active.. or so....

In Germany insurance pays for these tests. But I can see from the laboratory report that it costs 7 €... not that expensive....

 

[bspg]

Which tests specifically are they recommending you get?

The Igenex and Galaxy labs testing.

Isn't the ELISA test reliable? If not, then why?
The german Robert-Koch-Institut says ELISA is the first stage of testing. Only if this one is positive then you have to be tested if the infection is active.. or so....

In Germany insurance pays for these tests. But I can see from the laboratory report that it costs 7 €... not that expensive....

I've read really mixed things about it. Some say it's fine, others not specific enough. I've had two different doctors (MD and DO) tell me that speciality labs are more accurate.

There's plenty of arguments online about this topic so I won't go into it here. But long story short: if the testing accuracy is not great or unknown, I don't know if it's worth getting the tests.

 

[Cheesus]

The Igenex and Galaxy labs testing.

Unless those labs can produce replicated, controlled and peer reviewed evidence that their testing is effective, then we have no reason to trust them.

 

[Martin aka paused||M.E.]

But long story short: if the testing accuracy is not great or unknown, I don't know if it's worth getting the tests.

I have never seen such a statement from a doctor who does not collaborate with a laboratory offering one of these "special" tests ... and those laboratories have good reasons to recommend their tests since the ELISA costs 7 €

Furthermore: There are many false positives in these "special" tests... we had a thread about that recently. So what do you think: The ELISA is negative but the special test is positive. Which test is not reliable?

 

[TrialAndError]

Imo, don't bother with test. Your own intuition and knowledge of your health is the best "text" - just my two sense.

FYI, My early stage Lyme symptoms are gone!

Law of Appreciation requires me to thank, in no particular order, Will Wiegman a retired PhD in cyto-biology, Dr. Daniels (slave's universal cure), Edgar Cayce, a very loud band that kept me up until 2:30am, my parents, and other people, websites, forums.

If I am still symptom free in several more weeks, I will start making some videos, with details. In the meantime, I'd like to share my success story, for anybody who might still be in the early Lyme stage.

My Lyme symptoms disappeared in less than 6 hours but I don't know which of the many supplements, methods, meds, or prayers, made this happen -- perhaps all of them together.

As a performing artist, I went from 70% functional to 110% of my normal skill level. It was exhilirating to be free of brain fog, weakness, leg pain, swollen right ankle and foot, random body pains, weaknessness.

My symptoms were in the early Lyme stage. My friend, who got her diagnosis (Lyme, co-infections) at the same time, is not cured, and suffers badly. So, I was likely infected either on Halloween or in the next two weeks later. Yes, I have insect bytes and a bullseye rash, over a 2 week period starting Halloween. I could have also been infected by touching infected objects, sweat, perhaps even a cough. I am writing this on 4 December 2017.

For those who are also in the “early” Lyme/co-infection In the meantime, be advised that KEY ITEM in the “6-hour-cure” (my terminology), may be one, or more, or the following:

Aerobic exercise after Doxycycline as Will Weigman states - 10 minutes aerobics, 30 minutes after taking Doxy

Apricot kernels amygdalin as Will Wiegman states

Much larger initial Doxycycline doses, from my own calculation from info by John Hopkins Hospital and ILADS

The 'universal-slave-cure' from Dr. Daniels - pine nuts though, instead of turpentine

Edgar Cayce's beets, and [bitter, not the one in stores] almonds - apricot kernels are 1/2 the size of almonds

FYI: I was nearly incapacitated by Lyme around 2006. Was able to get 6 weeks Doxycycline, then, very early only by showing the hospital doctors news articles that Lyme really exists in my area, and a bullseye rash saved from a camcorder. This 2017, I was very disappointed that the doctors I met were still not following the ILADS guideline

The Edgar Cayce reading also said watermelon. I used a blender and made a smoothie, with ginger and a whole garlic bulb.