posted
Hi So for those of you that have read a few of my other threads, you know a bit about my story. I suddenly became ill about 8 years ago, and have suffered from severe fatigue and brain fog ever since.
It never goes away, but sometimes it is manageable, other times I can in bed for days at a time.
Anyhow, despite many complete workups over the years, nothing wrong was ever found with me.
However, 3 weeks ago I decided to see a LLD, since my symptoms were consistent with lyme, and I know that even though I had received several lyme tests in the past, that many of these tests given by traditional docs are pretty useless, so I decided to get tested by a LLD.
So....3 weeks ago I came in for my follow up appointment, to get my test results, and it turned out i was Negative for lyme, but absolutely positive for babesia and ehrlichia.
I was elated since this was the first time, in 8 years, that I actually received test results that showed something wrong.
My lyme doc would not say that the babesia and ehrlichia were definitely responsible for my symptoms of 8 years, but she said that it was certainly a good place to look. So, Ive now been on ABX for almost 3 weeks.
So, obvsiouly Ive been very optimistic as Ive been hoping that all my symptoms might very well be due to these 2 infections, and if we can treat them, I might just have my health return to me.
However, I just stumbled upon some troubling info. I discovered that 4 years ago (about 4 years after I got sick), an infectious disease doc I saw, DID perform tests on all tick born diseases including babesia and ehrlichia.
Turns out that I tested negative for both babesia and ehrlichia for those tests 4 years ago.
So......does this mean that I did not have babesia/ehrlichia 4 years ago, and have since picked it up sometime after that test?
This obviously concerns me a great deal because if I truly was negative 4 years ago (4 years after I got ill), but have now tested positive, then I assume this means that there is no way that these infections could be responsible for my symptoms.
I will also add that the tests that this infectious disease doc performed 4 years ago were the same, state of the art tests which my current LLD is using.
So, it doesnt seem that he used poor tests which could account for my neg results.
The whole thing just seems odd to me. If you go strictly by the tests, the tests suggest that when I got my first tests 4 years after getting sick, I did not have these infections.
Then, the recent tests I had in whcihc I tested positive, this suggests that I picked up babesia/ehrlichia sometime AFTER my negative test results 4 years ago.
This just seems illogical. The tests suggest that I got sick 8 years ago, was then tested 4 years later for these infections which could cause my symptoms, these tests revealed I did NOT have the infections, but then 4 years after that, I test positive for these infections which fit my symptoms to a TEE.
SO whats the deal??? Do u guys think that I actually HAVE had these infections all along, and they are responsible for my symptoms, but for some reason the tests 4 years ago were false negative?
Or, is it more reasonable to think that I really did not have these infections 4 years ago, hence they could not be responsible for my symptoms, but then by some crazy coincidence, I picked up these very infections sometime after those tests 4 years ago?
Seems neither scenario makes sense? What do you guys think?- SH
Posts: 35 | From NJ | Registered: Aug 2009
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posted
I thought the testing for coinfections was just as unreliable as the Lyme testing. I have been told a postive test supports the dx, but is not necessary.
I would think you had the infections and they just didn't show up.
Is she saying you don't have Lyme but do have these other infections?
Up for someone more knowledgeable than me.
Posts: 984 | From US | Registered: Dec 2007
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posted
In my non medical opinion, you had a false negative 4 years back.
The tests are not very reliable, as you'll read on here time and time again. Clinical diagnosis by a knowledgeable llmd is much more significant than a test result.
I'm also betting that you've got lyme as well and it will show up at some point during your treatment for the coinfections. Or after.
Again, just my non medical opinion.
Posts: 423 | From Upstate NY | Registered: May 2009
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posted
What "state of the art" testing? An ID Dr did Igenex? I find that hard to believe. What labs did the LLMD use?
Find out SPECIFICALLY what babs tests were done, AND their results, then post them for us. Your ID Dr may have *interpreted* the tests as negative, while a more experienced LLMD would not have.
Also, the best babs tests are done on stained slides looked at by a human technician, however that is labor intensive and rarely done.
Finally, as in lyme, the tests are unreliable, and the dx is clinical.
It is very unlikely that you had babs and did not get lyme. Lyme is more prevalent in ticks so generally, if a tick is carrying babs and erlich, it's going to have lyme too.
You should post the lyme tests too and list the lab they were from. (You may have done that previously, but I sure don't remember what they were. What was the reaction here if you did?).
James
Posts: 872 | From New York City | Registered: Jun 2008
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posted
I think the LAB is the most important factor here. Get a copy of the tests and see what lab did the test. Not all labs are created equal!!!!!! That is an understatement!!
ID drs are clueless about labs and I'm SURE he didn't use Igenex!!!
Perhaps the LLMD DID use them! Hence, the difference.
I would GO WITH the positive babesia and erhlichiosis. Get treated and see what happens.
Keep in mind that you may feel WAY worse before you feel better as these meds will make you herx.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Nothing seems logical because you are not being diagnosed properly. Lyme disease is a clinical diagnosis, so the testing does not mean anything. If you do testing it is used only to support the clinical diagnosis. Negative tests do not mean that you do not have Lyme disease. The testing is extremely poor and only tests for a tiny fraction of the strains of the disease, and then misses those a majority of the time.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I would suspect the borrelia to be hiding from the immune system. I do believe a LLMD would treat for it anyway.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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