Negative tests, still symptomatic

Celeney said...
Hi everyone— looking for some input here and advice!
I have been dealing with severe symptoms from my lyme and co infections for two years now, completely bedridden and housebound because of extreme chronic pain and dysfunction. I’ve been treating for one year with heavy antibiotics, antimalarials, ozone IVs, SOT, herbs, and more. I have done a lot of retesting to monitor the infections and most recently redid Infectolabs testing. I have done it in the past and it was showing residual infection and still positive . Now it’s showing negative across the board but I’m feeling worse in ways, and I’m dealing with some sort of nerve damage in my right arm and pain in my legs still. I’ve been off all meds for two weeks now. I’m not sure if i still have lyme, TBRF, Babesia and bartonella, or something else is going on—- however I have done extensive testing for other conditions outside of lyme and co and nothing can be found. What should I do? Should I stay on herbs? go back on antibiotics? Try a different lab to test? Leftover damage? I’m confused why I’m still suffering so much. Thanks!

Hello - welcome to the forum!

What does your Lyme doc say?
Sometimes switching to a different LLMD for another set of eyes is warranted.
What abx did you use to treat the infections ?

“ Methylene blue 150 mg twice a day
Rifabutin 150 mg twice a day
Minocycline 100 mg four times a day
Clotrimazole 1 pill twice a day
Tinidazole 500 mg 3 times per day
Clarithromycin 500 mg 3 times per day
Hydroxychloroquine 200 mg per day
Ivermectin 2 tablets twice a day
Dapsone 100 mg twice a day
Mepron 2 tbsp twice a day
Primaquine 1 tablet a day“

Did you take all of the above at the same time? And did you take them daily ? Or were they pulsed.
Also I have only seen mino prescribed at 100 twice per day.

That is a lot to take!

Celeney said...
I took that all at the same time daily lol, definitely was a lot! the dapsone nearly killed me so I have had to take a break for a few weeks off of everything. Now with this negative test I’m unsure what to do! In so much pain still I live in my bed

That IS a lot!

Can’t rely on testing.
If only we could use testing to determine if we’re in remission….

Celeney said...
Hi everyone— looking for some input here and advice!
I have been dealing with severe symptoms from my lyme and co infections for two years now, completely bedridden and housebound because of extreme chronic pain and dysfunction. I’ve been treating for one year with heavy antibiotics, antimalarials, ozone IVs, SOT, herbs, and more. I have done a lot of retesting to monitor the infections and most recently redid Infectolabs testing. I have done it in the past and it was showing residual infection and still positive . Now it’s showing negative across the board but I’m feeling worse in ways, and I’m dealing with some sort of nerve damage in my right arm and pain in my legs still. I’ve been off all meds for two weeks now. I’m not sure if i still have lyme, TBRF, Babesia and bartonella, or something else is going on—- however I have done extensive testing for other conditions outside of lyme and co and nothing can be found. What should I do? Should I stay on herbs? go back on antibiotics? Try a different lab to test? Leftover damage? I’m confused why I’m still suffering so much. Thanks!

Have you detox while on abx? I was on abx soooo long and it caused SIBO which made symptoms feel worse and added on.

MedicalNerd---
Yes, I did do some detox.
I was doing glutathione IVs until it got too expensive, then started taking oral liposomal glutathione, NAC, Jernigan CNS PNS, Bioray NDF detox, and I tried infrared sauna but I stopped being able to tolerate it. I recently got a Mito red light and PEMF device, not sure if those help with detox though. Should I have been doing more?

thanks for the extra detail Celeney - it gives me much more to go on to offer what is hopefully more useful advice.

i will comment on each point by point

1, vibrant labs and DNA connections are regarded by many as second tier labs - and are some of the private labs with the least robust validation published - but Igenex are regarded as about them most reliable in the USA and meeting CDC criteria is a pretty strict threshold in their tests for lyme. i would tend to trust their result of TBRF in a person with a positive test for lyme also - as the two are known to be tick bite associated.

Galaxy are the top tier for bartonella testing - so again i would tend to treat that as a true positive.

fry labs is a bit of an unknown - to my knowledge their "discovery" of "protomyxzoa" has largely been walked back - or assigned to be another species since the initial media focus - but is perhaps mute since it was negative
red labs was to me an outlier until recently when i discovered their test was actually developed at Leicester university in the UK by published researchers. it is the only test in the world for lyme using this technology - and as such its a little hard to interpret - in theory it should be much more sensitive than any other form of testing available - making your negative result surprising - but it also seems to find positive results in 50% of so called "healthy controls" - so interpretation is a major issue - either Lyme is a ubiquitous organism in humans but does not always cause disease, or the test has a very high false positive rate for reasons that are not understood - or perhaps just a random number generator.
Infectolabs i do not know much about - but regarded as second tier also i think - most of their tests are traditional serology based

overall based on the Igenex and Galaxy results alone - it looks like you can have a pretty high confidence of lyme, TBRF and Bartonella - maybe other based on the other labs positive results - but i personally wouldbe a little more cautious of those

2, OK "herx" followed by some improvement is also a good indication of chronic infectious disease - and so adds further support for the above Lyme, Bart, TBRF - and possible others

3, understood - but which tests.
the reason that i ask is that there are no tests yet available that can tell us when a person is no longer infected. serologic tests in particular are known to be unreliable for this. other markers have been experimented with but so far no clear pattern has been established. it is one of the key challenges in the testing world at this point. This point is poorly understood - even by many LLMD's who continue to use serologic testing as a means of attempting to determine treatment progress in their patients. other studies and also anecdotal reports show it is common for lyme patients to test positive / negative / different bands on WB - over time.

4, i don't think this is well researched - but it was a massive cocktail. which could well have had some impact on the immune system, and a week is a very short time for the immune system to recover. its possible that this had some effect on the test result

5, OK - thanks for the list - so a good deal of work has been done to try to rule out other possible causes - and none found - including gut health and auto-immune screens = good.

Questions
was ANA or dsDNA positive / any antibodies at all ?


have you had any testing done on the status of your immune function?
=Immunoglobulin sub classes?
=Mitogen stimulation assay ?

Wow thank you so much for all the helpful information.

Basically I should go by symptoms not tests because they aren't able to tell us much about infection load. I did Infectolabs Elispot testing for all coinfections. I think I will try and retest with Igenex and Galaxy again, but maybe it's not worth it either?

So I've done ANA testing many times, always negative. Also dsDNA was negative.
I have done immunoglobulins and subclasses, always normal. Never heard of mitogen stimulation, I'll have to look into that.

Mainly dealing with disabling nerve, tendon, ligament pain, and some muscle pain, horrible skin discoloration, muscle twitching, extreme hair loss (from medications), and anxiety. I just want to finally get to a place where I'm semi-functional again.

Just a thought - you could consider sending a blood smear to TLabs, which can tell you if there is still bartonella biofilms showing up in your blood. I think it's a fairly well regarded lab, run by top bartonella doctor Dr. Mozayani, though of course he kind of has conflicting interests with being a main practitioner treating it. But the research methods are respected, I think. Anyway it just might help you to detect if there is bartonella still hanging around.

Celeney said...
Wow thank you so much for all the helpful information.

Basically I should go by symptoms not tests because they aren't able to tell us much about infection load. I did Infectolabs Elispot testing for all coinfections. I think I will try and retest with Igenex and Galaxy again, but maybe it's not worth it either?

So I've done ANA testing many times, always negative. Also dsDNA was negative.
I have done immunoglobulins and subclasses, always normal. Never heard of mitogen stimulation, I'll have to look into that.

Mainly dealing with disabling nerve, tendon, ligament pain, and some muscle pain, horrible skin discoloration, muscle twitching, extreme hair loss (from medications), and anxiety. I just want to finally get to a place where I'm semi-functional again.

thanks again for the info

so my overall thoughts are

1, immune dysfunction causing you to remain ill - despite adequate treatment. this is a tricky one as i don't think we really have the test technology or knowledge to fully characterise a fully working immune system. the two tests i mentioned are often used by some of the better LLMD's - but my feeling is these are just very broad brush tests and a good deal of immune dysfunction is possible without showing up on either. still its at least something to check.
the basic concept is that we are not like test tubes in a lab where you just need to get the required concentration of ABX and that sterilises the bacteria. in fact its usually not possible to get sterilising concentrations of antibiotics into all tissues (and in any case bacteria that form chronic infections typically form persister cells which are tolerant to 1000x the levels that inhibit or kill fast growing bacteria) and so instead the doses we use are more an effort to swing the needle a little in favour of the host - so that the host immune system can gain the upper hand.
but if the host immune system is in bad shape - no amount of antibiotics will cure infections.
as is demonstrated by AIDS patients who die from trivial infections despite massive doses of abx.
so that's one thought - poor immune function could potentially be holding you back.

2, the second thought i had was related to a presentation i read recently - given by a prominent LLMD - Dr L - on Babesia - he describes many of his patients making little or no progress in treatment - and just suffering endless herx reactions - unless babesia is tackled first.
other LLMDs also believe in tackling Babesia if present first
he describes Babesia as being profoundly immuno suppressive - which kind of ties into the above point.
from memory - his treatment protocol was
atovaquone, artemether, plus 2 antibiotics, and heavy doses of lumbrokinase

i will try to find a link to the preso and post it up tomorrow

“the second thought i had was related to a presentation i read recently - given by a prominent LLMD - Dr L - on Babesia - he describes many of his patients making little or no progress in treatment - and just suffering endless herx reactions - unless babesia is tackled first.
other LLMDs also believe in tackling Babesia if present first
he describes Babesia as being profoundly immuno suppressive - which kind of ties into the above point.
from memory - his treatment protocol was
atovaquone, artemether, plus 2 antibiotics, and heavy doses of lumbrokinase “

That is what DrJ says (tackle Babesia first)
His protocols always start with Babesia meds.

Are you referring to the Dr L In Ireland?

(New here, first comment..)

I don’t think Dr L sees himself as a LLMD at all, but I want to share with everyone a recent public video of him, discussing Babesia odocoilei during a 9-15-2022 “Public hearing on the Tick Crisis, Lyme Disease in Pennsylvania”. The ID specialist after him sounds like a dufus. Anyway, Skip to +26:45/+27:05 where he talks for a few minutes with microscopy PowerPoint.

https://www.senatorbrooks.com/2022/09/15/hhs-092022/

Haven’t seen this on YouTube or anywhere. His daughter had EM from a tick, is how he first became involved. Personally, I had EM after a tick in the adjacent Pennsylvania county to him (8 years ago), basically two towns away, but my PCP ELISA was negative and I didn’t know better, been working on it for a few years now. (Haven’t been back to PA since, I do not know him).

For OP concern, that is A LOT of abx, but my first thought is that you still haven’t fully explored everything possible yet. I don’t see Disulfiram, dapsone-200mg/400mg, pyrazinamide, ..., cefuroxime+Alinia+(...). The Babesia issue is also definitely a big question for all of us.