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Pardon My Continued Ignorance on Igenex Tests: Another Question

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Posted 12/7/2022 8:23 PM (GMT 0)
So I've asked about the Igenex results I received in late October. Another look has led to more questions.

On the first page, the only thing it shows is "B. burgdorferi -G/M/A Serum >80"
80 indicates a positive result. Simple enough - Lyme.

Then on the Lyme ImmunoBlot IgM, band 23 is an IND and 41 is a positive. Those do not meet Igenex criteria for a positive and, of course, does not meet CDC for positive. And the age-old question about what is IND really mean comes into play.

The "Borreliosis - Relapsing Fever Borrelia ImmunBlot shows positive, meaning 2 or more TBRF Borrelia species-specific antibodies were found.

The Lyme ImmunoBlot IgG has positives for bands 41 and 58. Again, according to Igenex, that does not meet Igenex or CDC standards for a positive.

If the two are negative, is it the TBRF that caused the positive > 80 (positive for Lyme) on the first page?

Results for positives on Bartonella genus by Immunblot and Babesia Duncani, which is >80 with 30 being positive, are simple to interpret.

I definitely have Sjogren's Syndrome. and I agree with garzie that treating infections could help tamp the Sjogren's down. The question is what to go after and mentally survive the process.

Or do we even know which one would be best to go after first as hitting all three at once is not something I can tolerate with kidneys and overall. After so many years pf this, at this point, I'm running out of desire to do this anymore.
Posted 12/7/2022 10:50 PM (GMT 0)
i will answer what i can - but with testing - often - we simply cannot have a perfect picture with less than perfect tests

first IND - this usually means indeterminate

typically, in serologic tests like these, this means that some reactive antibodies were found - but not enough to reach the cut-off threshold for the test to report a positive - remember all tests are essentially reporting on a continuum from nothing to lots.

the lab sets this cut-off threshold based on studies of the overlaps of positive and negative results and where it feels setting it will give the most diagnostic value.

can borrelia from TBRF trigger antibodies on the Lyme borrelia immune/western blot ?
possibly - it depends on how much shared genes - or rather the proteins transcribed by them are shared between the two species.

i haven't looked into this - and i am not sure if it is even known - given the degree of heterogenicity in wild populations its likely that no one really knows, as it could depend on the strain of each in any one patients case.

but i doubt it matters - as far as i am aware lyme and TBRF are treated with the same abx
so when considering which to treat - they are in the same block. so that helps.

i think evidence is mounting that babesia, when present, is often the blocking infection - and after that perhaps bartonella.
Dr J, Dr H, now Lindner etc
so i think if i had to i would treat in that order - if i had to choose
Posted 12/7/2022 11:36 PM (GMT 0)
Hi Running Wild,
I think that the testing is and always will be confusing until they quit trying to test antibodies. It's well known that these infections suppress the immune function, so every negative test should be heavily scrutinized. That's also why a lot of the LLMD's will treat based on symptoms instead of only by what a test has shown.

I'm in agreement with Garzie (of course) on borrelia from TBRF triggering antibodies on the Lyme borrelia immune/western blot.

I know many of us back when I was really active on here, had the best success treating whatever infection was giving us the most/most severe symptoms and work our way down from there, with plenty of organ support and detoxing. This often leads to treating more than one infection at a time, but it's also something that a person would 'work into', not something to start all at once. Of course, this doesn't work for everyone, your mileage may differ!
Posted 12/8/2022 12:27 AM (GMT 0)
“And the age-old question about what is IND really mean comes into play.”

My llmd considers it a positive - some “thing” showed up - just not enough to fit the lab requirement for a positive.
Posted 12/8/2022 3:19 AM (GMT 0)
band 41 is definitely presence of flagella ( not many bacteria have flagella)

your immune system is likely suppressed to show test results . after some provocation and some cats claw i had a positive absolute . however it wasn't til i saw spirochetes in my own blood under microscope that it was really confimed . babesia is pretty easy to spot in a decent giemsa stain also ....
Posted 12/8/2022 9:45 PM (GMT 0)
Thanks for your answers. Much appreciated. The TBRF has shown up on three-straight tests as positive. That tells a story. Same for Babesia Duncani and Bartonella. It makes sense why antibodies may be reacting.

Treating is complicated because of kidneys. That has been a frustration for years now, and, in last year or two, Sjogrens. The neurologist who has m,e on IVIG for neuropathy has suggested low-dose prednisone to go along with it in hopes of helping with the pain in feet and even an itchy rash that has developed on body. I was once told the rash and itch were Grover's Disease, but that usually stays on back on chest.

And, as dcd has mentioned and I have learned, herbs needed for Lyme and co-infections tend to fire up the neuropathy pain. It really messes with my mind, which is all over the place right now.

Side note: Good to see se your name again,. Traveler. I've seen it a few times, and hope whatever is/was setting you back has improved.

Thank you all.
Posted 12/8/2022 10:54 PM (GMT 0)

running wild said...
And, as dcd has mentioned and I have learned, herbs needed for Lyme and co-infections tend to fire up the neuropathy pain. It really messes with my mind, which is all over the place right now.

Side note: Good to see se your name again,. Traveler. I've seen it a few times, and hope whatever is/was setting you back has improved.

Thank you all.



Thank you, Running Wild! The issues I'm having have to do with having these infections untreated for so long that I have autonomic nervous system damage causing several issues (so no denying ANS damage), and causing my main issue which is very volatile BP that stayed in the 'stroke zone' for 3 weeks until I finally was admitted (or I finally admitted I needed to be!) to the hospital where they could inundate my body with drugs to bring my BP back down. It's taken me 2 years to recover - that many weeks with BP that high daily does bad things to the body!

Anyway, I'm mainly back here because another person contacted me asking for help with these infections (that has never stopped) and I needed the help from this community to find a good doctor to help him get started because he's highly compromised now with infections, symptoms and issues. Like many here.

I'm forever grateful to those that participate on these forums for continuing to share information openly and willingly. We may not change the world right away, but we can change the world for one person - and one person at a time will eventually change the world! (Yep, I have high hopes!)
Posted 12/9/2022 1:30 AM (GMT 0)
If you don't mind me asking, Traveler, how high was you BP? I do believe I have autonomic neuropthy with peripheral, but my BP is fairly under control with meds I wish I didn't have to take. Stomach issues could be autonomic (constipation, bloating) with me.

Did you have additional issues with the autonomic, not that the blood pressure isn't enough. And have they done anything for you try and improve the autonomic?
Posted 12/9/2022 6:06 PM (GMT 0)
“ On the first page, the only thing it shows is "B. burgdorferi -G/M/A Serum >80"
80 indicates a positive result. Simple enough - Lyme. ”

- I don’t understand what kind of test this is. Can someone explain?
Posted 12/9/2022 8:58 PM (GMT 0)

running wild said...
If you don't mind me asking, Traveler, how high was you BP? I do believe I have autonomic neuropthy with peripheral, but my BP is fairly under control with meds I wish I didn't have to take. Stomach issues could be autonomic (constipation, bloating) with me.

Did you have additional issues with the autonomic, not that the blood pressure isn't enough. And have they done anything for you try and improve the autonomic?

One thing's for sure, as you said, BP issues are enough! But, as you guessed, no, that's not all I now live with. I have a bit of trouble with balance/dizziness (partly due to BP meds), temperature dysregulation (I spike a low fever every time I'm up and moving around for 15 - 20 minutes or more), bowel issues (like my infections, these have plagued me most of my life, IBS-C). There's also something going on with my vision, but I can't discern if it's more due to the dizziness/balance issues, or if it's a separate issue.

What sent me to the emergency room and resulting hospital stay was Baroreflex failure, which is also a part of autonomic dysfunction/failure. My BP shot up to 230/97 or higher several times a day, and it didn't matter what meds they threw at me, my body would not respond appropriately. After 3 weeks, and the episodes just got to be longer and closer together, everyone finally decided that it was time for me to get emergency help. They just dumped drugs into me in the ER - finally a good dose of nitro brought things to a slower pace. The one thing that baffles everyone is that I would also shake uncontrollably during these BP spikes - like anxiety on steroids. Only, it wasn't anxiety. I've had to deal with some pretty serious anxiety before, and there were aspects of an 'anxiety attack' that just were not present during these episodes.

I've not been 'officially' tested for things like POTS/orthostatic hypotension (but I don't think I deal with this), or any genetic issues that may cause autonomic issues, like gene mutations.

I thought we had things under control - for at least a little while - but the shaking has started again. It's always late at night, when I'm in bed reading just before bed. I am NOT at all stressed at that point in the day! So, no way it's anxiety. Not only that, but I have organized my life now so that I have the least amount of stress in my days and night as possible. I've never thought I could live this stress-free, but hubby is completely on board with keeping my stress low. LOL - no more hospital visits!

Running Wild, if this doesn't answer your questions, please feel free to ask more, and I'll see if I can clarify further.
Posted 12/10/2022 6:18 PM (GMT 0)
That is the highest blood pressure I’ve heard of yet. And to have it for that long. Very glad it’s under control but sorry other issues are causing more problems. Is there any hope in correcting damage id ANS?

Have doctors talked about possible IVIG to see if that might help? And do you experience peripheral neuropathy in feet?

Over the years, I never knew Lyme or co-infections could lead to ANS damage or true autoimmune until the last couple of years. And the autoimmune could lead to neuropathy, rather than it mimicking. In some cases it does mimic, but, as we’ve found out, there can be true autoimmune with neuropathy develop.

I’m trying IVIG as tests were positive for LARGE fiber neuropathy. I always assumed it was Bart causing issues and could resolve with treatment.

My hope is you find a way to get everything under control. You have helped so many people, and it’s heartbreaking to read what you’re going through.

At this point, I am educating myself on stem cell therapy as life as it stands is not really a life. Some say try hey don’t know enough about stem cells to try it, but it keeps coming along and improving.

Please keep us updated on how things are. I knew something really tough had to be going on with you. Thanks for sharing and know you are in my thoughts and prayers.
Posted 12/10/2022 6:31 PM (GMT 0)

Traveler said...


One thing's for sure, as you said, BP issues are enough! But, as you guessed, no, that's not all I now live with. I have a bit of trouble with balance/dizziness (partly due to BP meds), temperature dysregulation (I spike a low fever every time I'm up and moving around for 15 - 20 minutes or more), bowel issues (like my infections, these have plagued me most of my life, IBS-C). There's also something going on with my vision, but I can't discern if it's more due to the dizziness/balance issues, or if it's a separate issue.

What sent me to the emergency room and resulting hospital stay was Baroreflex failure, which is also a part of autonomic dysfunction/failure. My BP shot up to 230/97 or higher several times a day, and it didn't matter what meds they threw at me, my body would not respond appropriately. After 3 weeks, and the episodes just got to be longer and closer together, everyone finally decided that it was time for me to get emergency help. They just dumped drugs into me in the ER - finally a good dose of nitro brought things to a slower pace. The one thing that baffles everyone is that I would also shake uncontrollably during these BP spikes - like anxiety on steroids. Only, it wasn't anxiety. I've had to deal with some pretty serious anxiety before, and there were aspects of an 'anxiety attack' that just were not present during these episodes.

I've not been 'officially' tested for things like POTS/orthostatic hypotension (but I don't think I deal with this), or any genetic issues that may cause autonomic issues, like gene mutations.

I thought we had things under control - for at least a little while - but the shaking has started again. It's always late at night, when I'm in bed reading just before bed. I am NOT at all stressed at that point in the day! So, no way it's anxiety. Not only that, but I have organized my life now so that I have the least amount of stress in my days and night as possible. I've never thought I could live this stress-free, but hubby is completely on board with keeping my stress low. LOL - no more hospital visits!

Running Wild, if this doesn't answer your questions, please feel free to ask more, and I'll see if I can clarify further.

These symptoms could fit a lot of things, but the symptoms and pattern match a pheocromocytoma. Rare tho, but figured I’d mention. Did they rule that out? Check your catecholamines?
Posted 12/10/2022 8:29 PM (GMT 0)

running wild said...
That is the highest blood pressure I’ve heard of yet. And to have it for that long. Very glad it’s under control but sorry other issues are causing more problems. Is there any hope in correcting damage id ANS?

Have doctors talked about possible IVIG to see if that might help? And do you experience peripheral neuropathy in feet?

Over the years, I never knew Lyme or co-infections could lead to ANS damage or true autoimmune until the last couple of years. And the autoimmune could lead to neuropathy, rather than it mimicking. In some cases it does mimic, but, as we’ve found out, there can be true autoimmune with neuropathy develop.

I’m trying IVIG as tests were positive for LARGE fiber neuropathy. I always assumed it was Bart causing issues and could resolve with treatment.

My hope is you find a way to get everything under control. You have helped so many people, and it’s heartbreaking to read what you’re going through.

At this point, I am educating myself on stem cell therapy as life as it stands is not really a life. Some say try hey don’t know enough about stem cells to try it, but it keeps coming along and improving.

Please keep us updated on how things are. I knew something really tough had to be going on with you. Thanks for sharing and know you are in my thoughts and prayers.

Running Wild, first, my apologies for taking over your thread.
I do experience peripheral neuropathy, but it comes and goes, so I don't believe it's related to anything other than a slightly unstable lumbar region, due to age and neglect.

There are medications, one being IVIG, that can be offered, but I would need more testing before anyone could know what might help - and what would hurt my situation. So, I'm on the hunt for a Neurologist that has experience treating Autonomic Nervous System issues. There's no hope of getting to a true ANS specialist, not around here. So I will continue my own research to be sure that whoever I end up with will treat me with the right things.

I had Lyme and Bart active for over 37 years, so there's no telling which one actually caused the ANS damage, or if it was the two infections combined for so long that have created these issues for me. Unfortunately, the world is only just now accepting the fact that Lyme is an issue in more than just a few states, so people like me have no one interested in seeing just what happened - at least not yet. I know that Lyme patients have had massive improvements in acceptance at more doctors' offices, and that there are more Lyme Literate doctors now - we don't have to stay 'in the shadows' any longer, fortunately. But, there is still such a very long way to go.

Thank you so very much for your well wishes, and for keeping me in your prayers! They mean a lot to me. This forum, and the members here, have always held a special place in my heart, since way back when I was a newbie! It's such an open and sharing community here, that it just can't be replaced! I will never turn someone away, saying something like I no longer do that. I will always be available by email, and plan on continuing to post here once in a while. There are still too many out there that need someone to just hear them, or offer words of support, a tidbit of information that I learned in my treatment travels,or just a different point of view.

I do plan on updating what's going on with me - as answers come. I have a feeling that, once again, I'm in a unique situation, and not many (or I pray not many!) will experience the same issues. BUT - should someone come here that is experiencing something similar, the information I post may help them find out what's happening. And that's what this forum is all about.
Posted 12/10/2022 8:39 PM (GMT 0)

dcd2103 said...
These symptoms could fit a lot of things, but the symptoms and pattern match a pheocromocytoma. Rare tho, but figured I’d mention. Did they rule that out? Check your catecholamines?

It took me a few months to convince doctors that I wasn't just experiencing "normal" anxiety. Once I did, they were all so convinced that I had Pheo (adrenal tumor), that I was sent immediately to an Endocrinologist that checked every adrenal hormone. They were either low or normal levels. So, the Endo released me from his care, instead of looking further - which has always been an issue with the medical community for me. If what I have doesn't fit neatly into one of their "boxes" right away, I'm just released from their care - that's IF they see me to begin with, which is unusual. The very volatile BP was what got me in this last time. Now, I'm on my own to try to get any specialists to listen to me.

So, I went off on my own - I'm not one to sit idly by - and started doing my own research. I back up all of my information with mainstream medical articles, so no one has 'challenged' me yet. They just agree that it could very well be from my long-standing relationship with Lyme, coupled with the fact that I've had a handful of mild to moderate concussions (4 or 5). These things all add up to what could have led to my BP issues (Baroreflex failure) that led me to the hospital for treatment.

But, I really do appreciate you asking about Pheo!Thank you! Had I not already been checked for it, I would have gotten right to it. The symptoms really do fit, until my adrenal hormones got checked.
Posted 12/10/2022 9:25 PM (GMT 0)
Garzie - Didn’t mean to not mention your suggestion. Will look at it when I get home. Your thoughts are always respected.

Traveler - I’ve learned there is a need for better, more autonomic specialized doctors and testing facilities.

I wanted to go to a clinic that offers full autonomic testing, rather than just doctors that do the tests on heart/ sitting and standing BO. I had heard the Univ. if Alabama Birmingham has a full clinic for full testing. Then I read there are only 7 in the entire nation.

The first available appointment at UAB’s is in July! That tells you the need for more. Doctors I’ve come across only mention the heart tests, but it can come in so many forms.

Same for Sjogren’s. The only problems usually mentioned are dry eyes and dry mouth. But no one talked about neuropathy and how sero-negative patients for Sjogren’s are more prone to the neuropathy. You would think that would be critical information to pass on, especially if you are a doctor.

And you didn’t hijack anything. All we can discuss is something someone can learn from.
Posted 12/10/2022 10:02 PM (GMT 0)
Running Wild,
I agree with your assessment about the whole country needing better and more ANS screening and testing facilities. I have a feeling that there are only a few out there that are waking up to the need for this though.

I'm going to have to 'piecemeal' my testing, I'm sure. I can't travel (too much stress on my body makes my BP very volatile again - and it doesn't take much!), so I'll have to find a way to get the locals to do what I need them to do. Fortunately, I have a great Nurse-Practictioner that has been more than willing to work with me.

I'm so sorry that you live with Sjogren's. That's something I've not experienced, fortunately.

And thank you for your kindness about not highjacking the thread. My hope is still that someone, somewhere,at some point in time, can benefit from any information I can provide.
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