Any lyme test where you can see the bacteria?

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Sean.scott787
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Date Joined Jan 2016
Total Posts : 287
   Posted 1/17/2018 1:42 PM (GMT -6)   
I can't afford treatment any longer and my parents don't believe I have lyme anymore. They said if I have a test that shows the lyme bacteria (spiros) then maybe they will help with treatment. I've only had blood tests including Igenix.

So is there a test where you can see the actual lyme bacteria? Or is there a test with 100% accuracy regarding lyme? I heard of dark field microscopy or something like that before but I don't know if that's what I'm looking for. Thank you

Missouri
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Date Joined Sep 2017
Total Posts : 396
   Posted 1/17/2018 1:53 PM (GMT -6)   
can really help on the microscopy question, but I am curious what your Igenex results were?

Sean.scott787
Regular Member


Date Joined Jan 2016
Total Posts : 287
   Posted 1/17/2018 2:02 PM (GMT -6)   
I had several positive bands and some that were inconclusive but my results were CDC negative. Not that that means anything.

k07
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Date Joined Sep 2015
Total Posts : 2544
   Posted 1/17/2018 2:14 PM (GMT -6)   
Dr. M R released newsletter yesterday saying IGeneX immunoblot has specificity (98%) and sensitivity (90.9%). I also believe advanced labs does culture and if you grow spirochete they give you a picture of it.

Missouri
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Date Joined Sep 2017
Total Posts : 396
   Posted 1/17/2018 2:14 PM (GMT -6)   
there is sooo much info out there on how bad the testing is. Would they be open to reading some of that?

Girlie
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Date Joined May 2014
Total Posts : 33852
   Posted 1/17/2018 2:35 PM (GMT -6)   
Would identifying the DNA of the bacteria suffice?

You could try to get a positive pcr test.

They don’t think a WB based on antibodies is good enough ?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

1000Daisies
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Date Joined Apr 2016
Total Posts : 2473
   Posted 1/17/2018 2:55 PM (GMT -6)   
When the Igenex wasn't confirmative enough for me, I switched to Advanced Labs. They send a picture of the spirochete back as part of their lab report. We were all Advanced Labs positive (I was an extended culture though).

So, you are still sick but your parents don't think it's lyme anymore?
Sorry to hear that your parents don't sound supportive??? If they do not believe it's lyme, then what do they think it is? I'm always so surprised to hear when people say they are sure it's not lyme but yet have no clue what else it could be (then how can they be sure it's not lyme)?

Treating with herbals is a much more inexpensive route IMO if finances are limited. It's probably one of the cheapest things we've tried. Can you go down that path? Or have you already?
Kid#1: Extremely sick for several years, very difficult to treat, but doing great now!
Kid#2: Still sick now despite being treated for years but doing better (not well yet).
Kid#3: Generally good but relapsing off/on.
Me: Adv Labs positive 2016 (suspected I passed to my kids)-not as sick as others, mostly battling fatigue and yeast issues (heart/kidney issues resolved)
Treating with herbals now.

Girlie
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Date Joined May 2014
Total Posts : 33852
   Posted 1/17/2018 3:21 PM (GMT -6)   
1000Daisies said...


Treating with herbals is a much more inexpensive route IMO if finances are limited. It's probably one of the cheapest things we've tried. Can you go down that path? Or have you already?


Not always. Almost all my Pharmas are 80% covered but the tinctures alone when I was taking higher doses of several were about $200 per month, and I wasn’t on full protocols.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Rikky1
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Date Joined Jun 2015
Total Posts : 2922
   Posted 1/17/2018 3:59 PM (GMT -6)   
Sean what bands on your iGenex test were positive?

1000Daisies
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Date Joined Apr 2016
Total Posts : 2473
   Posted 1/17/2018 4:07 PM (GMT -6)   
$200 total for herbals for a month? I think that's very cheap personally. I guess it's all relative and perspective. smile

I don't believe we ever spent that much per month on herbals (but probably close on some of our higher treatment months) - and that is treating all four of us. Granted, we have lower doses (because we were so reactive) compared to many others (and went extremely slowly), so that is a factor in that we don't use nearly as much as some others here.

Back in the day when we did abx, we had really good coverage that covered nearly all of the abx. However, comparing to those IRL and others on this board, some people have paid more in their copay for mepron alone than what I've paid for herbals.
Heck, I use to pay a lot in supplements back in the day (fortunately, I've dropped most of them nowadays).

Like I said, it's just my opinion. smile
Herbals are definitely one of the cheaper things we've tried - in my experience of dealing with this for several years. We've done many mainstream and alternatives. A lot of the treatments are very expensive!! Compare to hbot, uvlrx, uvi, fct, rife, spooky, nutritional IVs/Myers/VitC, ozone IV, etc [we haven't done all of those]. And look at what some people pay for clinics (thousands!) in US and internationally.

Compare to abx? That would indeed vary based on your medical insurance coverage.

So, yep, $200/mo would be cheap to me to get our health back!!!! Oh my gosh, that seems like nothing compared to what I've paid/tried for other things over the years.

FWIW - I am rare in that I no longer let insurance dictate to me how I could get well. Once I let go of that for us, that is when we could find paths for healing. Of course, that meant that I had to pay out of pocket for things. But it was a no brainer to me - work through insurance which paid but failed to help us - or go away from insurance's limitations but heal and pay more. Our (US) medical system is very broken/flawed.

Girlie
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Date Joined May 2014
Total Posts : 33852
   Posted 1/17/2018 4:16 PM (GMT -6)   
For sure the Mepron will break the bank...depending on how long I need t take it.


The $200 was not full protocols, and maybe about 1/2 of full dose on some of them, and more on others.



"I am rare in that I no longer let insurance dictate to me how I could get well. Once I let go of that for us, that is when we could find paths for healing."

If I knew then - what I know now, I would have gone to the LLMD right away - but when I first went to my LLND, I really thought he'd be able to get me well. I've learned a lot in the last 3 years.

My LLND has healed many patients...but unfortunately...he's dropped the ball during the past year or so.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sean.scott787
Regular Member


Date Joined Jan 2016
Total Posts : 287
   Posted 1/17/2018 4:32 PM (GMT -6)   
Thanks everyone for the advice. Please stay on topic.

So advanced labs seems like the best test since they send a picture of the bacteria with the report. Does anyone know who accurate that test is?

Is the PCR test accurate?

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 1/17/2018 4:46 PM (GMT -6)   
Sean.scott256 said...
Thanks everyone for the advice. Please stay on topic.


Sorry, Sean.scott!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 1/17/2018 4:48 PM (GMT -6)   
Sean.scott256 said...
Thanks everyone for the advice. Please stay on topic.

So advanced labs seems like the best test since they send a picture of the bacteria with the report. Does anyone know who accurate that test is?

Is the PCR test accurate?


PCR is accurate when it's positive. It means they identified the dna of the bacteria in the blood sample.

But, there can be false negatives -- which don't necessarily mean negative...it just means in that relatively small sample of your blood...there didn't happen to be any dna of lyme bacteria in it.
But, there could be in your blood...just not that sample.

Whichever one you choose - make sure your parents approve and will accept the results...or you'll just be spending more money...for nothing perhaps.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Sean.scott787
Regular Member


Date Joined Jan 2016
Total Posts : 287
   Posted 1/18/2018 3:08 PM (GMT -6)   
Thank you I'll do some more research into that. If anyone has more information on testing please let me know!

1000Daisies
Veteran Member


Date Joined Apr 2016
Total Posts : 2473
   Posted 1/18/2018 3:33 PM (GMT -6)   
Sean.scott256 said...
Thanks everyone for the advice. Please stay on topic.

So advanced labs seems like the best test since they send a picture of the bacteria with the report. Does anyone know who accurate that test is?

Is the PCR test accurate?


That's what is great about an online board. A topic or conversation can go off in many directions. If you don't like it, just skip it. smile

I don't know about Advanced Labs being the best test, but I was happy with it as an alternative to Igenex. It gave me the reassurance that I needed to know that we were going down the right path. I had my doubts at one point.

There is criticism about blood testing like Advanced Labs (or people doing microscopes on their own). Some say it's not in the blood enough. I really question this though. All of us were positive through Advanced Labs. Mine was the only one that did an extended culture (my doctor said it was likely that I either have a low load or it was good at hiding); given that I don't have many symptoms at all associated with lyme, I suspect the low load (but who knows about the hiding!). Plus, numerous people who do the microscope independently report repeatedly how they find it in their blood too.

Rikky1
Veteran Member


Date Joined Jun 2015
Total Posts : 2922
   Posted 1/18/2018 6:21 PM (GMT -6)   
blood microscopy to me is a non-debatable way to see what's floating around in your blood. we know what pathogens like lyme look like so not too hard to find them once you have them under a microscope.

so many of the pathogens though we don't recognize hence why you'll hear things where they see unknown parasites.

nice thing is the meds/herbs we use to kill the pathogens we know about also work on the ones we don't.
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