Got some new labs back today. I asked the LLMD to check for *Southern* coinfections: Q Fever, Tularemia, etc.
Nothing.
I am still making antibodies to EBV, CMV and HHV6 although that last titer has come down. CD57 is about the same at 25.
Here is what I don't understand. I KNOW I have some kind of rickettsia and I can't find it. Given my symptoms I thought I would for sure be making antibodies to tularemia.
Nothing.
The way I found out I had Ehrlichia was through a urine pcr test. I AM making antibodies to things, like a massive response to coxsackie virus and so on.
Why the heck would I not make antibodies to these infections I have? Why can none of these tests find anything?
Posted by Keebler (Member # 12673) on :
- Coxsackie virus is nothing to sneeze at (hee-hee) that presence can make one feel awful and it can be chronic / stealth in nature.
You say that you are "still making antibodies to EBV, CMV and HHV6 . . . titers have come down"
Even if titers are down, that does not mean your body is going to feel great. I think the body still has to work just as hard regardless of the titer numbers.
As for others suspected, very often when the body is overwhelmed it just can't make the proper antibodies.
Sometimes, one infection has to be dealt - and progress must be made (which can take a long time) with before the body can even acknowledge another that is stealth in nature.
In such cases, often a different tick borne infection will show on tests after lyme has been tackled to a good degree.
They don't call these "stealth" infections for nothing. Evading detection is their forte.
And, these tests are not all the great, anyway. These infections can have various strains, morph, etc.
I don't put a lot of importance to the CD-57, though. I think symptoms matter much more.
Assuming you did not test again for lyme since there is no reason to do that. And, lyme is not going to go away all that soon. You know you have lyme, so even if it were just that, certainly can explain ongoing symptoms.
Keep addressing what you know you have, cover the bases for what an experienced LL doctor suspects based on all he's seen over time -- and what else might make sense to be on guard against . . .
and just keep doing what you know to be important. The good part is that much of the treatment do cover many bases. Remember that even the best protocols can take several years before a person might even feel somewhat better.
No one - ever - has all the detail we would like about, well, anything. So, with what we know, what seems likely, we call just cover the bases in all matters.
The best we can do is the best we can do and just keep strollin' along as best we can with some kind of happy tune. In time, at certain points around the corner, some things may appear more clearly. Other things might just fade out of awareness. -
[ 09-22-2016, 07:25 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- See TAMARA's post here. She has fabulous detail about various chronic stealth infections and how to determine some of the more elusive bits.
Diagnosing Lyme Disease (&/or whatever else is going on)
SEE the WESTERN BLOT EXPLANATION links here regarding lyme.
Other tick-borne infections and other chronic stealth infections discussed, too [such as: mycoplasma pneumonia, chlamydia pneumonia, EBV, HHV-6 and other herpes viruses and enterovirus, etc.]
Updated by Scott F: 06 May 2016 -
Posted by Keebler (Member # 12673) on :
- Also consider that whatever treatment you are doing, supplements taking, etc. might have skewed the test results.
And lab ability? The nature / parameters of the test methods used?
Although lyme was not being tested, some of the same things that can mess up a lyme test might also mess up tests for other stealth infections. You might just want to look at the "checklist" and see if the lab used for the recent ones covered all the details for the particular infections being checked.
Reasons for False Negative (Seronegative) Test Results in Lyme Disease
Still, I revert back to the "work on what you know is going on and cover the bases" approach. Just do the best you can and maybe lay off other testing for another six months or a year. -
Posted by Jordana (Member # 45305) on :
It's been my obsession for two years now. I just had/have this feeling there is more going on than Lyme.
There always is, but it felt like a LOT more.
It's like our whole diagnostic medicine system is a huge facade. In a year I figured out this was STARI and had to pay probably five thousand dollars before any test found anything.
I was thinking about trying oxymatrine for coxsackie. Though who knows if I have it anymore...
Posted by bluelyme (Member # 47170) on :
Bartonella disables the immune sx . Thats kinda low cd57...maybe rife for everything? Ever consider proto? how do you do on tini/alinia ivermectin?
Posted by Jordana (Member # 45305) on :
Tinidazole gave me a wild neuropthic herx and then stopped really helping.
CD57 is supposed to go down while you're treating or so I've been told and plan to believe. I probably won't ask for it for another year.