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Is it worth testing after a year?

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Posted 3/15/2017 8:02 PM (GMT 0)
I only got tested for Lyme, and I'm wondering if it's worth the money and margin of error to get tested for everything else (its been a year since The Bite)

I believe I contracted Lyme in April, 2016. I didn't consider it until I kept finding ticks on me, like little hints, finally got tested in July 2016 for Lyme. It came back indeterminate (IGM 31+++, 34 IND, 39 IND, 41++, 83-93+). My LLMD started trial treatment which helped a lot, so we went full-on treatment. When I hit a plateau and started having severe panic attacks with "air hunger" at 3 1/2-month intervals, among other things, we started treating for Babesia. Been on that for a month now, and had what I believe was my first herx ever, so I guess its working.

But, this is Lyme and Co, so my brain is on anxiety over-drive and I doubt my decisions and my sanity every step of the way. turn So I'm worried - what if the Babs treatment only takes me so far, and I have yet another coinfection? They are all so similar. I haven't been tested for Babs because of the expense and I read that its so very inaccurate. So technically we're going on a hunch. I'm wondering about the rest. Is it worth the money to maybe get a little "closure" and insight into all my coinfections, or just wait it out and go through each treatment and symptoms as they come? Sometimes I feel like this mystery will never be solved. Is it likely the tests will be positive after a year? Are they hiding? And to be honest, if I spent all that money and it came back negative, I wouldn't believe it anyway. But if it was positive, I'd feel so much better.

Thoughts?
Posted 3/15/2017 8:23 PM (GMT 0)
So with bands 31, 41 and 83-93 - that must have been an Igenex positive test result.

The testing for the co-infections is even more unreliable than lyme testing.

It all depends on whether you want to spend the money...knowing you may not have any more information.
Lots of false negatives with the confection testing.

Some LLMD's will treat all three of the B's (Borrelia, Bart, Babs) - I have read that both Dr. H. and Dr. J. (two very well-known, experienced LLMD's)

I originally only tested for Lyme...and it was positive...clinically diagnosed with bart.

Did a full year of bart treatment...still symptomatic...so my second opinion LLND - suggested i do a PCR test (blood and urine) at a lab that isn't even recognized for lyme treatment. But it was only $125 for each infection.
I tested positive for bart...and for me that was HUGE. It confirmed that I still had active bartonella and needed more treatment.
I was starting to question things at that point.

So, it's whether or not you're wanting to spend the money...I wasn't initially...but as time went on...I did..
Posted 3/15/2017 8:35 PM (GMT 0)

Girlie said...
So with bands 31, 41 and 83-93 - that must have been an Igenex positive test result.

yes, it was Igenex positive, CDC negative. IgG was negative (only 41++).

I'm very interested to know that another lab/test can pick up results. On such a long and tiring and expensive journey, its discouraging to know only hindsight is 20/20 and another's life lessons are not your own. But encouraging to see so many options.
Posted 3/15/2017 9:07 PM (GMT 0)
If you have the money you could run an IGENEX co-infection panel.
It covers a lot of bases, and uses different tests (ie. FISH for Babs), so it might turn up something you didn't know before, and that could be helpful.

But like Girlie mentioned, a negative result doesn't rule anything out unfortunately, so there's a chance you'd spend a couple hundred dollars and not get anything out of it.

In my opinion, no need to re-test your (very positive) borrelia results.

What's your current treatment?

If you're on Mepron or Malarone, you could ask your doctor to add in something like Bactrim DS. It has some activity against Bartonella and doesn't interact with Mepron/Malarone (unlike the more widely-used Bartonella-killing drug, Rifampin).

Levaquin can also be mixed in if your doctor allows, as it's supposedly good for Bartonella. However, it has some potentially serious side effects you'd want to talk about. I did Levaquin and Malarone together for 3 months and it was fine FWIW.
Posted 3/15/2017 9:07 PM (GMT 0)
When it's Igenex positive - i wouldn't say it's Indeterminate.

It really is a positive.

When I tested positive for bartonella at the 'other' lab...I tested negative for Babesia.

But, I can't count on that...and now I'm treating Babesia - full on.

I wish there we had a clearer picture - better diagnoses...maybe some day...
Posted 3/15/2017 9:15 PM (GMT 0)

Girlie said...
When it's Igenex positive - i wouldn't say it's Indeterminate.

It really is a positive.

Yeah, I guess it was on my mind that CDC negative meant there was some doubt, and my LLMD was hesitant to say the words, "You have Lyme." Probably trying to stay off the bad side of the CDC/Insurance and run a compliant practice.
Posted 3/15/2017 9:18 PM (GMT 0)

BabsBunny said...

Girlie said...
When it's Igenex positive - i wouldn't say it's Indeterminate.

It really is a positive.

Yeah, I guess it was on my mind that CDC negative meant there was some doubt, and my LLMD was hesitant to say the words, "You have Lyme." Probably trying to stay off the bad side of the CDC/Insurance and run a compliant practice.

probably.

It's a sad situation...that the LLMD's have to be careful for just wanting to treat people who are sick.

more than sad...it's sick.
Posted 3/15/2017 9:31 PM (GMT 0)

Mustard Seed said...

What's your current treatment?

I started with Amoxicillin, and when I responded well to that, we added Rifampin and Zithromax (I'm sorry I don't remember doses). That was an attempt to get to any coinfections.

I continued to do well, but the symptoms continued that pointed to Babesia. Since the test is so expensive, we just checked off the possibilities - first, stopped Rifampin and Zith to make sure it wasn't a side-effect (irregular heartbeat is a SE of Zith); then we treated for yeast infections with Diflucan to make sure it wasn't widespread Candida causing the symptoms.

After those were cleared out, and my air-hunger/heart palpitations/breathing problems/anxiety didn't improve, we started my current regimen of Mepron (1 tsp, 2x day) and Zithromax (1 tablet 1x day) in addition to the 4 Amoxicillin. After 2 weeks I had an awful, awful day, the room was spinning, worse vertigo than I've ever had (and I had a lot) and I spent the whole day on the couch. I recovered from that, but continue to feel sluggish, depressed, and it hurts to take a deep breath. Next appt next week. I have a feeling this regimen will continue until the parasite completes its reproductive cycle.

Just the length of this treatment is getting on my nerves, and I hate to think if there's yet another infection, we're never going to get to the bottom of it. And I want to know what's in me, but I don't want to waste money. My husband's money. I haven't worked since July :-( Starting to feel like i AM the parasite.
Posted 3/15/2017 9:35 PM (GMT 0)
I haven't worked since Aug or Sept 2013. cry
Posted 3/15/2017 9:37 PM (GMT 0)

Girlie said...


It's a sad situation...that the LLMD's have to be careful for just wanting to treat people who are sick.

more than sad...it's sick.

It psychs me out too, if he can't say it, and the CDC can't say it, and the insurance company can't say it, and no one's ever heard of it, is it all in my head?!?! Obviously, I wouldn't be prescribed these drugs if it was, but that's how my brain works right now - blaming, doubting, paranoia, second-guessing. Thus, my desire for a test, a piece of paper that says YOU HAVE THIS BUG. (of course, if I read the internet enough, that test came from a quack company, so I can't even trust that) rolleyes
Posted 3/15/2017 9:45 PM (GMT 0)
You have really great doctor.

Great calls on doing Diflucan for a bit, and switching to Mepron.

You're going to want to be treating with Mepron for a minimum of 5 months (one month longer than the life-cycle of a red blood cell, where Babesia lives).

On top of that, make sure you're taking Mepron with significant amounts of fat. Should be somewhere between 30 - 50g of fat with every dose, as you'll absorb much more medication:

onlinelibrary.wiley.com/doi/10.1111/j.1365-2125.1994.tb04232.x/pdf

Lastly, look into starting Artemsinin (Nutricology/Allergy Reseach Group brand) or Zhang's Artemisiae or Artemisiae-2 from Hepapro.

All in all, I think you're on the right track. Stick with it.
Posted 3/15/2017 9:55 PM (GMT 0)

Mustard Seed said...
You have really great doctor.
Great calls on doing Diflucan for a bit, and switching to Mepron.

Thanks. That was my idea, and he agreed :-D Maybe I missed my calling

Mustard Seed said...
On top of that, make sure you're taking Mepron with significant amounts of fat. Should be somewhere between 30 - 50g of fat with every dose, as you'll absorb much more medication:
.

I read that. I take it with my fish oil caps (does that count?) and usually with the meatiest part of my meal, or nuts. Any other suggestions of how to incorporate that much fat (sorry if that info is in the article. Too much read make brain hurt)

Mustard Seed said...

All in all, I think you're on the right track. Stick with it.

Though I'm not looking forward to this tongue-tingling, spoon-staining yellow paint for another 4 months, it's good to hear from someone else. Encouragement is everything these days. And faith as small as.. well... you. smilewinkgrin
Posted 3/15/2017 10:00 PM (GMT 0)
I take mine with a generous Tbsp of coconut oil and Tbsp of Peanut butter.

Then I eat a full meal after.

I'm not liking the yellow paint....
Posted 3/15/2017 10:01 PM (GMT 0)
I'm sure fish oil counts, though I'm not sure how many grams of fat there are in them; you'd have to look it up.

Nuts and meat are great too. Other suggestions (if you can tolerate them of course) would be milk, butter, peanut butter, eggs, cheese, yogurt, coconut oil, avocado, olive oil... stuff like that smile
Posted 3/15/2017 10:09 PM (GMT 0)

Mustard Seed said...
I'm sure fish oil counts, though I'm not sure how many grams of fat there are in them; you'd have to look it up.

Nuts and meat are great too. Other suggestions (if you can tolerate them of course) would be milk, butter, peanut butter, eggs, cheese, yogurt, coconut oil, avocado, olive oil... stuff like that smile

I just checked the fish oil... it's only 2 g of fat rolleyes 30-50g sounds like a LOT of fat though... ?
Posted 3/15/2017 10:12 PM (GMT 0)
Ya it's a significant amount, but it doesn't need to be 50g.
Just the more you take, the more medication you absorb.

Girlie had a great suggestion with coconut oil:
1 TBSP = 14g of fat.
Posted 3/15/2017 10:15 PM (GMT 0)
1 cup of sliced avocado is 21 grams.

I just know that because I love them so much.
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