Lyme test turning positive after antibiotic treatment?

[bmoberg337]

I tested negative, and have continued to test negative for Lyme disease on the IgeneX western blot and PCR. However, I was highly suspect of having lyme disease since I had four active co-infections, an NK CD57 of 7, and a C4a of 13000. I also lived in Lyme endemic regions (including Lyme CT) and was constantly in the woods.

My doctor told me that I probably have Lyme, but people with the worst cases usually test negative. After treatment begins and they "stir things up" people start testing positive. Does anyone have any experience with this? How long did it take before you started testing positive?

Thanks.

 

[Martial]

I tested negative on certain parts of the IgeneX test at first, it then showed cross brand activity on the bottom which did result in positive borrelia activity (CDC negative). The fact I was bit multiple times and pulled the ticks off me in endemic areas and clinical manifestation was proof enough.

They really do need to find better ways of diagnosing the illness as even IgeneX's western blot only tests antibodies which of course won't be there in an overwhelmed immune system. PCR smears are also no guarantee it is unfortunate but I suppose just a hard infection to really test for.

I know many others that re tested after rounds of antibiotics or herbal protocols and then showed positive infection but I haven't re tested yet myself, too expensive for now.

The tests do and will help for a lot of cases with positive results. The issue is that the false negatives are far too high of a rate.

 

[bmoberg337]

Martial thanks for your response. My doctor makes it sound like this is a common occurrence. I have never seen someone talk about this on forums, nor are there any published case studies on this.

You would think doctors would frequently document and publish these cases as proof that Lyme test's are not sensitive enough and can overlook persistent infection particularly in "Chronic Lyme" cases. Hard to argue facts if they exist, but maybe this is an oversimplification on my part.

 

[justy]

My doctor also suggest an antibiotic challenge to see if it brings the lyme put of hiding (my own simplistic words, not his) I am currently testing negative, but have two other bacterial infections so he highly suspects Lyme based on this and symptoms and my work as a gardener and my misspent youth hanging around in woods and fields (we often stayed up all night and then just fell asleep in the grass until the dog walkers were out and about!)

 

[duncan]

bmoberg337, you may wish to look at which specific bands you tested positive for if you had a Western Blot done. The CDC's 2T has very real limitations that can translate into false negatives. Some bands are specific to Borrelia, and you and your clinician can make educated diagnoses accordingly.

I also would recommend the C6 Peptide, but that too may be limited by strain and immune issues. Also, the C6 is curious because its utility is purportedly restricted to acute cases, but that may be only because they can't fully explain its values in late stage cases - but you can at least see how it registers. If your value is a positive...

Hmmm...justy, that might also apply to you. Did you get insight into any specific bands? I apologize if we have already had this discussion; I frequently suffer from Swiss Cheese-Brain Syndrome.

 

[bmoberg337]

bmoberg337, you may wish to look at which specific bands you tested positive for if you had a Western Blot done.

I also would recommend the C6 Peptide, but that too may be limited by strain and immune issues. Also, the C6 is curious because its utility is purportedly restricted to acute cases, but that may be only because they can't fully explain its values in late stage cases - but you can at least see how it registers. If your value is a positive...

.

Thanks for the suggestion Duncan. The only band that was positive on my Igenex western blot is the 41 kDa. I have taken this test along with the PCR 4 times in the last 7 months. In that time I have been on 4 different antibiotics, undergone 30 HBOT sessions, and have combined the Cowden and Jernigan protocol. I would think if there was anything to "stir" up it would have surfaced by now, but maybe it takes more time.

As you mentioned my doctor suggested the efficacy of the C6 test is limited to acute cases. However, I'm beginning to wonder if its worth doing tests that utilize CSF or synovial fluid just to make sure we are treating the right thing.

 

[bmoberg337]

My doctor also suggest an antibiotic challenge to see if it brings the lyme put of hiding (my own simplistic words, not his) I am currently testing negative, but have two other bacterial infections so he highly suspects Lyme based on this and symptoms and my work as a gardener and my misspent youth hanging around in woods and fields (we often stayed up all night and then just fell asleep in the grass until the dog walkers were out and about!)

Justy, sounds like you are hearing the same thing from your doctor as I am. I get hung up that the fact that several doctors witness this phenomena yet never publish their findings (or at least I have never come across this data). It would seem like publishing such data would be the nail in the coffin to end the debate about whether or not Chronic Lyme/persistent infection exists.

 

[duncan]

bmoberg337, if you're trying to see if you've Bb, I'm not sure a LP is the best route. If you're in Europe and you've been infected with garinii or afzelii, and your symptoms are primarily and overtly neurological, then maybe.. But I'm not sure of the CSF route outside of acute cases. Maybe others will disagree with me. The clinicans have to be looking for the right things, including Bb antibodies (the usual ELISA and WB, but with CSF) and pleocytosis and glucose levels etc. But the kicker is the Antibody Index which is often sought after these days, but, well, I'm personally not sold on it if only because Im not sure its utility has been demonstrated for B. sensu stricto. Still, if your symptoms are neurological, a CSF exam should be on the table at least as an option. I had one.

Also, unless you've Steere's disease, I'd think twice about the synovial fluid thing. Do you have swollen painful knees? Regardless, the choice is yours. Worse case it comes up negative, I suppose.

I would think hard about the C6 test. I like it. One problem, as I understand it, is researchers cant seem to explain why it sometimes generates positive values sometimes AFTER treatment. This happened with me. So I guess it's not surprising that, in my book at least, one possible reason may be that it works, and those positive values post treatment are representative of an ongoing infection.

Again, just food for thought.

 

[Martial]

Its all a matter of politics and insurance coverage. If they made chronic lyme into an actual disease per criteria of the CDC then it would open a lot of controversy regarding

Justy, sounds like you are hearing the same thing from your doctor as I am. I get hung up that the fact that several doctors witness this phenomena yet never publish their findings (or at least I have never come across this data). It would seem like publishing such data would be the nail in the coffin to end the debate about whether or not Chronic Lyme/persistent infection exists.

It is all about politics man, there is more then enough evidence and test trials to prove it. The main issue is with insurance coverage and the use of treatment consisting of long term antibiotics. Since there is no sure fire test to show that 100% of patients still have remaining infection then coverage options are weaker. To be honest I don't see the CDC or any other government funded agency changing their views anytime soon either.

 

[bmoberg337]

I would think hard about the C6 test. I like it. One problem, as I understand it, is researchers cant seem to explain why it sometimes generates positive values sometimes AFTER treatment. This happened with me. So I guess it's not surprising that, in my book at least, one possible reason may be that it works, and those positive values post treatment are representative of an ongoing infection.

.

Thanks for the info Duncan. I didn't realize that CSF tests were limited in usefulness to certain strains, although it's not much of a surprise since nothing is straightforward with this disease. I think I'll ask about the C6 test the next time I see my doctor. I also read about another test called the Lymphocyte Transformation Test (LLT) that looks like it has some promise.

. To be honest I don't see the CDC or any other government funded agency changing their views anytime soon either.

I don't see them budging anytime soon either. I can't imagine a government agency owning up to the fact that they have improperly diagnosed and treated patients for decades. The law suits would be incredible.

 

[Alea Ishikawa]

I've read something like 30% of patients need a "challenge" before testing positive. I've heard other people say a challenge might be necessary, too. However, I think you've made a reasonable attempt. I'm assuming you've been doing a challenge for at least a week and then testing 3-5 weeks after? Some people go on doxy for 1-3 months.

CDC says 4-6 weeks for IgG antibodies to be produced in a big enough quantity to be detected on a Blot. Mayo Clinic says IgM peaks at 3-6 weeks after a tick bite.



What also caught my eye here was that you said you tested positive to band 41. From here, that band is cross-reactive with other pathogens. So, not definitive on Lyme.

Have you tried looking at other co-infections (Ehrlichia, Tularemia, Bartonella, Babesia, Mycoplasma)? Are you testing for the right kind of borrelia?



Another thing to consider is that it might be possible to get a co-infection without Lyme.



I would caution on a spinal tap. I remember my neurologist telling me that 50% of the patients ended up with considerable headaches after. Perhaps she meant post-dural-puncture headaches. A spinal tap is also contraindicated in cases of intracranial pressure. I don't want to scare you away completely. Just something to consider.

 

[bmoberg337]

I've read something like 30% of patients need a "challenge" before testing positive.

CDC says 4-6 weeks for IgG antibodies to be produced in a big enough quantity to be detected on a Blot. Mayo Clinic says IgM peaks at 3-6 weeks after a tick bite.


What also caught my eye here was that you said you tested positive to band 41. From here, that band is cross-reactive with other pathogens. So, not definitive on Lyme.

Have you tried looking at other co-infections (Ehrlichia, Tularemia, Bartonella, Babesia, Mycoplasma)? Are you testing for the right kind of borrelia?


Another thing to consider is that it might be possible to get a co-infection without Lyme.

I remember seeing the 30% in a paper that Dr. Joseph Burrascano wrote, but he did not cite any research for this figure.

I was able to find published work that reviewed past research on Chronic Lyme. It contained controlled studies that observed seroconversion and seronegative patients with active Bb infections. The research is here for anyone that is interested:
http://francelyme.fr/mediatiques/wp-content/uploads/2013/05/chroniclyme.pdf

Also, I don't believe I was recently infected. I had some minor symptoms years ago when I was living on the east coast (near Lyme, CT) and did not become fully symptomatic until a little over a year ago when I moved to the west coast. Since I've spent my entire life on the east coast at ground zero for ticks it's unlikely that I contracted lyme+co-infections out here. Also, I didn't take my first lyme test until I had been sick for several months. I think I'm at the point where my immune system is not producing antibodies anymore, or perhaps it never did. The literature I have read suggests that seronegativity is possibly the result of antigenic variation. It's the bacteria's adaptation to your immune system to avoid detection. If there is any truth to this then the OSP would change and you would never test positive on a western blot. So the idea of seroconversion doesn't make sense to me, but there are documented cases of it happening.

At my first appointment I asked my doctor the same question regarding the co-infections w/o Lyme. He said it's highly unlikely to have 4 co-infections w/o lyme. Thus I'm put in a position to trust his judgment or find answers through other tests.

 

[heapsreal]

Slightly off topic.
Whats the current opinions on testing cd57 nk cells as apart of diagnostic test for lyme?
Is there low nk function in lyme?

 

[duncan]

I believe mainstream Lyme ignores as irrelevant nk cell activity/levels, and disparages as unproven and unreliable the CD57 variable.

However, lots of LLMD's and even a fair amount of IDSA members pay attention to low CD57 values, and count a rise in those values as a significant metric in mapping improvements.

 

[bmoberg337]

Slightly off topic.
Whats the current opinions on testing cd57 nk cells as apart of diagnostic test for lyme?
Is there low nk function in lyme?

There is diurnal variations in the number in healthy controls, as much as 60%, per the practitioners findings below:
http://www.ilads.org/media/boston/slides/savely/savely.html

However, I think the work done by Stricker provides credible evidence that there is some kind relationship between Lyme and CD57. Reports on what happens to cell counts as treatment progresses are mixed. Someone needs to do a follow up study to Strickers work using a similar or greater population size to validate his findings. To the best of my knowledge this hasn't been done yet.

To give you an example of it's variability here are my results over the past couple months.

August 2014: 27 uL(started abx)
October 2014: 7 uL (on abx and started HBOT)
November 2014: 60 uL (on abx, doing HBOT, and started Jernigan and Cowden protocol)
January 2015: 23 uL (on abx, HBOT, and Herbals)

Based on these data points it's difficult to say if treatment is helping.

 

[Helen]

I'm beginning to wonder if its worth doing tests that utilize CSF or synovial fluid just to make sure we are treating the right thing.

KDM, told me that it is typical for late Lyme that there are no signs of it left in the spinal fluid. I had high IgG and high IgM antibodies from an ELISA test but not the pleocytosis, glucose levels or Antibody index that infectious specialists in my country ask for to confirm Lyme. A spinal tap is golden standard here if somebody has symptoms that points to a Neuroborreliosis (NB). I have had two. I learnt that it is a too thick needle that contributes to headache after the tap. I didn´t get headache, and wouldn´t hesitate to get it done again if necessary (by an experienced doctor).

 

[bmoberg337]

KDM, told me that it is typical for late Lyme that there are no signs of it left in the spinal fluid..

Thanks for the info. I think I'm biased towards that approach because a lot of research studies that fail at cultivating bacteria from serum are successful at cultivating it from synovial or spinal fluid.

 

[Martial]

Slightly off topic.
Whats the current opinions on testing cd57 nk cells as apart of diagnostic test for lyme?
Is there low nk function in lyme?

It can and sometimes is often used as another component of clinical diagnosis, not sure how many other things affect cd57 levels but I don't think it would ever be an exclusive test for Lyme disease alone.

 

[Martial]

Thanks for the info. I think I'm biased towards that approach because a lot of research studies that fail at cultivating bacteria from serum are successful at cultivating it from synovial or spinal fluid.

It's not worth the very low chance they find anything in the CSF, most people I talk to say there are a lot of side effects and risks attached to it and never find much.

 

[physicsstudent13]

KDM, told me that it is typical for late Lyme that there are no signs of it left in the spinal fluid. I had high IgG and high IgM antibodies from an ELISA test but not the pleocytosis, glucose levels or Antibody index that infectious specialists in my country ask for to confirm Lyme. A spinal tap is golden standard here if somebody has symptoms that points to a Neuroborreliosis (NB). I have had two. I learnt that it is a too thick needle that contributes to headache after the tap. I didn´t get headache, and wouldn´t hesitate to get it done again if necessary (by an experienced doctor).

I would consider 10 days of rocephin to lower neuro inflammation with a gallbladder medication
according to some a negative CSF test is not conclusive for Lyme's disease and it is common for a Lyme's test to turn positive after antibiotic treatment