• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Borrelia positive through Arminlabs. I am positive or not?

duncan

Senior Member
Messages
2,240
Yep, it's a conundrum.

Many decide based on how treatments make them feel. Like ME/CFS, in many ways it's a battle to simply manage symptom severity. Not according to mainstream Lyme, of course, but ultimately for many diagnosed with a TBD the proof rests in what works.

Sometimes a short course of abx cures the problem. Other times, it does not. Some people find a sustained combo of abx that - for them - hold the worst symptoms at bay. This is a very individual disease.

You also need to consider persister cells.

If you want more data that will help you feel more confident with a Lyme diagnosis, I would consider a WB. But even that is full of issues that relate back to strain/species sensitivity, immune system snafu's...it's a mess.

We all wish it were simple.
 

msf

Senior Member
Messages
3,650
Well, I think it does make it less positive, in that it is a less positive test result. Also, I think the way the testing works you can adjust the cut-off to make someone positive when they weren´t before, but you would have to adjust it a lot to make someone with + 18 negative for Lyme.

Re: the rest of your post, Justy, that was what I was talking about when I referred to circumstantial evidence.
 
Last edited:

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
No Mycoplasma and Chalamydia Pneumonie, even though tested positive?
I know that it's not really important treatment wise, as they all respond to doxycicline, but both Chalymdia Pneunomie and Mycoplasma describe my symtoms better than Borrelia
yes you may have them also. I have Lyme, bart and Cpn - Cpn is NOT easy to treat, causes neuro symptoms and may need multiple abx to cure. Is alaso hard to test for. You may well have them all.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Well, I think it does make it less positive, in that it is a less positive test result
Yes of course you are right - what I really meant was that it doesn't mean you have worse Lyme or less worse Lyme - it just means you have a response to the test. Don't know why I answered the way I did - because we weretn talking about how much lyme you have. Im tired and probabaly shouldn't be trying o talk abou this at this time of night.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Oh, I am more confused than ever.

God bless us
Not sure there is much to be confused about. You took some tests, they were positive for Lyme, Elrichia, and as you say Cpn and Mycoplasma (im too tired to really look at it so didn't see these). Your CD57 is very low - something is supressing your immune system, most likely all those infections you have!
 
Messages
36
Location
Sweden
Not sure there is much to be confused about. You took some tests, they were positive for Lyme, Elrichia, and as you say Cpn and Mycoplasma (im too tired to really look at it so didn't see these). Your CD57 is very low - something is supressing your immune system, most likely all those infections you have!


I am confused about whether I should stop my CFS cause hunting and start dealing, living and treating Lyme or continue looking for it.

Either way it's a tough ride.
 

msf

Senior Member
Messages
3,650
How long have you been ill for? If you haven´t been ill very long, the potential payoff from treating a possible Lyme infection is probably greater.
 
Messages
36
Location
Sweden
How long have you been ill for? If you haven´t been ill very long, the potential payoff from treating a possible Lyme infection is probably greater.


4 years, since 2012.

But as I stated previously, I react positively to antibiotics. There is this post I've made a last week, I think.
http://forums.phoenixrising.me/index.php?threads/why-do-antibiotics-help-most-of-us.43949/
So maybe it's true - I am a Lymee.

Does doxaxycline target Babesia, Bartonella, Rickesttia and Yersinia?
 

msf

Senior Member
Messages
3,650
Are you positive for all those too?

I only know about Yersinia - it is often resistant to Doxy these days.
 
Messages
36
Location
Sweden
No, I haven't got tested for them yet, but I will do so. I am especially interested in Babesia, as it explains my symptoms most. And the way I see it, in my possible case of Lyme, it's mostly the co-infections that are active, not Borrelia itself.

I got tested for Borrelia and other 6 co-infections at once: Erlichia, CPn, Mycoplasma, EBV, CBV, CMV, HSV 1/2. I got positive for all apart from CMV and HSV 1/2. High value for EBV. 8 for lyric and 28 for latent

Someone told me in regard to my low value in Borrelia and Erlichia that ''Elispot doesnt just tell if you are infected or not, it also tells how well your immune system is fighting the infection(s). So your body may be too sick to show a high result in the test.'' Is there any logic in this statement?
 

msf

Senior Member
Messages
3,650
Yes, I think there is, but it doesn´t help us tell the difference between someone who is uninfected and on the wrong side of the cut-off and someone who is infected but whose immune system isn´t fighting the bacteria.

When I was tested I was only + 2 for Yersinia, but I was still IgA positive a year and a half after I contracted it and also had lots of symptoms that could be attributed to a Yersinia infection.

If you think about it another way, if someone´s immune system was great at fighting the infection they probably wouldn´t have it anymore.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
I am confused about whether I should stop my CFS cause hunting and start dealing, living and treating Lyme or continue looking for it.

It may be that Lyme and co infections are not the only thing going on. You may have Lyme and co, you may have ME CAUSED by Lyme and co or you may have what Dr Horowitz terms MSIDS - Multi system infectious disease syndrome. Either way, right now it doesn't matter. You have a large piece of the puzzle in place. NOT treating the Lyme and co would be crazy.

4 years, since 2012.

Then there is every chance that treating the Lyme and co will bring significant benefits. Those of us ill for 20, 30 years or more are struggling to get any benefit from treating infections - others ill less long stand a better chance as far as I can see.

Does doxaxycline target Babesia, Bartonella, Rickesttia and Yersinia?

NO. Babesia is like malaria and requires antimalarial drugs to treat. Bartonella is not affected by Doxy - Rifampicin and some others are effective against Bart - I have Bart and it is hell to treat. Just taking doxy is a bad idea. Single antibiotic therapy in late or disseminated Lyme is going to do as much harm as good. Multiple different types, and bio film busters may be necessary. There is some evidence to suggest monotherapy will push the lyme into forming bio films and hiding deeper in the tissues, plus for Cpn, bart and neuro lyme you need a drug that will cross the bbb. Rifampicin does this in Bart - I had an awful time on it, after three days I fel completely detached from reality, borderline psychotic and suicidal. I had to stop treatment after only 5 days.

in my possible case of Lyme, it's mostly the co-infections that are active, not Borrelia itself.

Why do you say this? what evidence do you have? This may or may not be true - you cant really know.

'Elispot doesnt just tell if you are infected or not, it also tells how well your immune system is fighting the infection(s). So your body may be too sick to show a high result in the test.'' Is there any logic in this statement?

Yes there is. Someone else might ve albe to explain the science - I cant do that. My result was 1,1,1. I was given a clinical dx. My immune system is a mess - all my test results were low.
 

Valentijn

Senior Member
Messages
15,786
2 facts that counterargument Borrelia hypothesis:
1) The relatively low values that are borderline
It doesn't matter if positive values are high or low. Positive is positive.

My values were also positive but low, possibly due to the specific type of Lyme I picked up in Southern Oklahoma 20 years ago. I had a standard Jarisch-Herxheimer reaction when on the antibiotics which target Lyme, with acute hypotension and mild fevers. And my symptoms and other lab tests supported the diagnosis as well.

In your case it sounds like you do better during or after taking the antibiotics, so regardless of the diagnosis, you're probably in favor of the treatment? In which case, 100% certainty of the diagnosis maybe isn't so important, so long as the diagnosis is pointing at a treatment which is beneficial for whatever is actually the culprit in your case, be it Lyme or something else.