Did finding an infection via Armin Labs have a positive influence on your treatment & recovery

[Fogbuster]

I'm very curious to know the answer to this, as I'm really struggling to work out whether getting testing via Armin Labs would be a smart idea after reading through the large thread on here putting these labs into serious question. I've also come across a decent amount of people online who were wrongly diagnosed with Lyme, went through lots of treatment eg long term antibiotics and actually ended up getting worse...

 

[Thinktank]

I voted no. The test turned out positive and because of that i was diagnosed with chronic lyme disease. A 4 year long treatment with many IV and oral antibiotics destroyed my health and left me financially broke.
In the end it turned out i never had lyme disease. Elisa and western blot always tested negative.
The doctor i went to has destroyed quite a few lives with his "chronic lyme treatment", "worth the risk" he said.
All these lyme tests are completely useless. DO NOT TRUST ARMIN LABS OR ANY OTHER LAB OFFERING ALTERNATIVE LYME TESTING!

 

[mattie]

Arminlabs and BCA have been proven to be unreliable in the documentary: Undercover in German Lyme Clinics.

Super-healthy journalists: Lyme diagnosis and treatment plan
Super-healthy danish celebs: Lyme diagnosis and treatment plan
Parkinson patient: Lyme diagnosis and treatment plan
ALS patient: Lyme diagnosis and treatment plan

So if Arminlabs or BCA would diagnose you with lyme disease that would mean...? Nothing.
There is no reliable Lyme-test.

So how can you rule out Lyme? You can't really.
Standard Lyme testing: too many false negatives. Arminlabs / Elispot: too many false positives.
I had 0 improvements from some very heavy courses of IV and oral antibiotics. No reactions either, no "herxing".
Nothing happened. Just got a little sicker from all that poison.
For me that was enough to not go further down that road.

 

[shannah]

I haven't been tested by Armin Labs but jumped on the Igenex band wagon in the early 2000's. Both myself and another family member were treated with various regimes of antibiotics for years and neither of us recovered.

I'm glad for the people who have regained their health going this route. It would seem to indicate that there are some misdiagnosed in both the ME and Lyme groups. However, the experience left me skeptical about Armin Labs and any further Lyme treatment as being effective for either of us.

 

[Hip]

I haven't been tested by Armin Labs but jumped on the Igenex band wagon in the early 2000's. Both myself and another family member were treated with various regimes of antibiotics for years and neither of us recovered.

Yes, IGeneX like ArminLabs also appear to have a high false positive rate (see here).


The CDC-recommended test for Lyme is the two-tier test (ELISA/EIA plus Western blot).

 

[Belbyr]

I got screwed by Igenex. Did 3-4 years of oral and IV antibiotics everyday of the week. Health was no better and spent $100,000's on treatment and doctors appointments.

As my phycologist told me, lyme is the most over and under diagnosed illness in the U.S. I knew exactly what he meant by that.

 

[YippeeKi YOW !!]

A 4 year long treatment with many IV and oral antibiotics destroyed my health and left me financially broke.

Oh God, @Thinktank, that's really horrible. It's beyond horrible. I have no words sufficient, which for me is unusual.

The doctor i went to has destroyed quite a few lives with his "chronic lyme treatment", "worth the risk" he said.

Yes, while his, and his wallet, thrived. And anything's worth the risk when someone else is taking it, and the repercussions.

Just disgusting.

I'm hoping that you've recovered, at least somewhat, both physically and financially.

 

[YippeeKi YOW !!]

I've also come across a decent amount of people online who were wrongly diagnosed with Lyme, went through lots of treatment eg long term antibiotics and actually ended up getting worse...

Thank you for this thread, @Fogbuster , it's a real public service. It would be great if more people posted about treatment prtocols that turnd out to be worse than useless, and physically and financially devastating.

 

[percyval577]

If the insurances pay for a test or a treatment it might be nevertheless useless or dangerous, but if you on your own need to pay for it I would never forget about doubting it. They only want your best, but it´s not your health.


If you ask in respect of lyme I would tell:

I myself remember that my mental abilities changed after ticks (therefore borrelia). After so manny years I would be a patient with lyme disease, and indeed after some negative ELISA tests I got two positive ones and one positive western blot "possibly late stage".
But why spending money for questionable long term antibiotics if I can have a common "antibiotic" for nothing? cf: Aguirre, Clark et al. 2013. This I would call good luck.
I have been told, an antibiotic is something which damages the pathogen much, but yourself less (therefore you can applicate it). Until now I have been more damaged by doctors than by my own antiborrelia diet, to be clear, I can´t see any negative effects.
When I started my diet I got initially very good effects and thought "borrelia!". Maybe it was even not true anymore, but the changes which these special few bacteria have caused need to be reversed. So maybe even the tests have been nonsense. But I am on a long term imrpovement.

 

[Mel9]

I have not cast a vote because my positive for Borrelia was done in Australia.

I am forever grateful for the antibiotics that allowed relief from the unrelenting horror of Lyme disease pain and malaise.

Unfortunately, because I had the infection for so many years before being diagnosed, the infection caused autoantibodies. I now have severe POTS, muscle weakness and fatigue and am now included in the ME CFS ‘basket’ being sucessfully treated with Mestinon.

I believe that had I discovered the infection earlier, I would now be healthy.

 

[Fogbuster]

Wow, that's quite an overwhelmingly negative response to armin labs & Igenix so far. Thanks for your gutwrenching but very insightful contributions @Thinktank @shannah @Belbyr. Hopefully this thread will be able to help others scouring the www with similar questions about lyme testing from independent labs. Might get interesting if some peeps who have had a positive experience begin to chime in. I guess we'll have to see...

 

[Belbyr]

Wow, that's quite an overwhelmingly negative response to armin labs & Igenix so far. Thanks for your gutwrenching but very insightful contributions @Thinktank @shannah @Belbyr. Hopefully this thread will be able to help others scouring the www with similar questions about lyme testing from independent labs. Might get interesting if some peeps who have had a positive experience begin to chime in. I guess we'll have to see...

I was at a clinic for lyme treatment. I met about 60-70 patients over the course of the year to two years I was there. I saw two cases where two women came in with positive CDC tests, they were in and out of the clinic in 1-3 months with full recoveries and never returned. I have kept up with most patients via facebook/instagram over these years. I would say more than 50-60% are still ill with different diagnoses now like Bipolar disorder, POTS, CFS, MS, Lupus... some died from ALS and cancer. Some are better now but found an alternative diagnosis that lead to a cure or therapy.

I have learned over my years of searching for doctors... You have to find a doctor that is actually involved and active in the research of what they treat.

I contacted Igenex not too long ago about my positive test result they gave me back in 2006 when I learned they redid there testing after Dr Brian Fallon (Columbia University) proved them to my phony. They said they redid their criteria, I asked if they could retest me with the new test... They told me it would cost me $700+. Igenex has destroyed many lives.

 

[YippeeKi YOW !!]

They said they redid their criteria, I asked if they could retest me with the new test... They told me it would cost me $700+. Igenex has destroyed many lives.

@Belbyr
Thank you for posting that warning. I think that Borrelia/Lyme disease is even more misdiagnosed than ME/CFS, fibro, and MG all rolled together. It's really disheartening.

 

[Sidny]

Seeing as how human cells are outnumbered 10 to 1 by microbes it's easy to understand how lives are ruined by antibiotics that decimate this intricate symbiosis.

It's hard to believe in this modern era that archaic antibiotic type treatments haven't been abandoned in favor of more precise phage like therapies(IMO)

 

[YippeeKi YOW !!]

Seeing as how human cells are outnumbered 10 to 1 by microbes it's easy to understand how lives are ruined by antibiotics that decimate this intricate symbiosis.

@Sidny
Oh, hallelujah !!! Couldn't agree more if I'd said it myself. And I have, or variations thereon. Thank you so much for posting this and opening the door to more input on the subject from other posters.

 

[Sidny]

@YippeeKi YOW !!

Not saying they can't be helpful but I think they fall in to the damned if you do or don't category. I probably wouldn't be alive today were it not for a course I took for an infected wound I had after an accident at sea last year. On the other hand I think antibiotics I took at the onset of my illness for a likely viral infection made me invariably sicker.

A genius researcher by the name of Amy Proal is doing some incredibly fascinating work on this subject and I think she's really on to something.

Hopefully more good people with the resources to make changes will follow suit on these microbiome studies.

 

[Malea]

My armin labs results were positive and the results matched with other testing methods. (I tested many bacteria, not only lyme)
But treating the infections with antibiotics was the worst idea ever.

I think there is this small percentage of people who will have great success by treating lyme or other infections. And than there are a lot of people who will be worse with it cause its not the driving force behind their illness.

 

[MEPatient345]

I tested positive armin, and even though I was highly distrustful of the lab, I did about 6 months of heavy duty double and triple antibiotics “just to be sure”, along with herbs, very expensive supplements, diet etc. The abx did nothing except make me sicker, they are very hard on the body.

At the time, I joined a Facebook group in Ireland that promotes armin, even allowing their reps and the main Armin doctor to be part of the Facebook group. Whenever I pointed out the problems with the tests I got criticized / silenced in the group as if I was questioning Lyme itself. I would bring up also that the Lyme doctor in Ireland (who uses armin and insists they are reputable) does say to patients that the tests are not definitive and only proved that once there was an exposure to the bacteria. But, the heavily promoted myth in the group was that the tests were absolute proof of a current infection. They were not receptive to my opinions so I left. I was surprised how little wariness there was among patients about something that is clearly being marketed to them by people who stand to gain a lot financially.

 

[Fogbuster]

I have kept up with most patients via facebook/instagram over these years. I would say more than 50-60% are still ill with different diagnoses now like Bipolar disorder, POTS, CFS, MS, Lupus... some died from ALS and cancer. Some are better now but found an alternative diagnosis that lead to a cure or therapy.

That's a high %... Looks like I won't be going down this route unless I get a positive response from the CDC recommended Lyme tests @Hip suggested.

 

[Belbyr]

I know that Chronic Lyme does exist and Brian Fallon @ Columbia University who is doing lots of cool studies on lyme is a guy I can trust. He doesn't take sides with the IDSA but doesn't side with ILADS either. He actually used one of his own lab techs as control in a lyme study, and what do you know he found him positive. Asked him if he had ever been sick or bitten, he replied 'no'. He was healthy as could be.

Don't venture over to www.lymenet.org. I spent a couple years on their during my treatment. It is a 'far out' crowd, everything is lyme, and I was banned towards the end.