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Igenex Results/Other results: Please share your analysis of my results with me

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Posted 9/15/2015 10:00 PM (GMT -5)
I've done my own research regarding this but am looking for multiple opinions, even from lay-persons (meaning not licensed medical practitioners). You guys seem knowledgeable about this stuff so I searched for a forum to seek answers and came across this.

Lab results:
Babesia duncani: High Titer, 1:1024
(Not Igenex)
MTHFR Mutation: Heterzygous 1298, Heterzygous 677

IGENEX Lyme Results:
IFA: 80
IgM: 31++, 41++ Igenex Negative, CDC Negative
IgG: 39 IND, 41 + Igenex IND, CDC Negative
No other bands showed any reaction.

Previous infection noted:
-chlamydia pn = titer not high enough for active infection
-mycoplasma pn = IgG 0.56, IgM .74 (I read this as borderline, as it is only negative due to the IgM, positive threshold is .76)

Also recently diagnosed with MS, and was on Solu-medrol 500mg IV daily for 5 or 6 days, two weeks prior to these labs being drawn.
Tested negative for other infections like Syphillis, etc.

So, THREE questions:
What are your takes on my Igenex results?
How about the chlamydia/mycoplasma results?
Any idea if the solu-medrol would have an affect on the results, given the high dose so close to the labs?


edit: related lab prior to suspecting anything infectious
Lumbar puncture from initial MS flare up. WBC count: 7.0 normal values are 0.0 to 5.0
Proteins high, also presence of ogliclonal banding.

Post Edited (thatdudefromkansas) : 9/15/2015 9:09:11 PM (GMT-6)

Posted 9/15/2015 11:14 PM (GMT -5)
thatdudefromkansas Welcome! I'm so glad that you chose to join our community.

I'm not that familiar with the other test but I can help you you with your Igenex results. I used this site to understand mine. http://lymetwistontherocks.blogspot.com/2011/01/western-blots-what-do-all-of-those-darn.html

While Igenex says your test is negative you tested VERY positive for Lyme specific bands. The only way that happens is if you have Lyme in your system. (just in case someone tells you this-there is no such thing as a false positive.

31 outer surface protein A (OspA), specific for Bb
41 flagellin protein of all spirochetes; this is usually the first to appear after a Bb infection

It's common that people who have Lyme are misdiagnosed with MS, ALS, lupus and more.

I don't have the MTHFR mutation but many members here do. Someone will chime in and comment on that. For some reason the board has been unusually quite the last 10 days or so. If you don't receive other response please bump your post back to the top.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more.​


For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​


You can email the Tick-Borne Disease Alliance at​[​​url]​medicalinfo@tbdalliance.org​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​​

ILADS has their own referral system as well:ilads.org/ilads_media/physician-referral/


​ You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey:
http://www.ilads.org/lyme/treatment-guideline.php


Other's will add more.

Janet
Posted 9/15/2015 11:22 PM (GMT -5)
Cool, thanks for the info and reply.

I've obviously looked into the lyme thing, based on a request to do so by my mother.
She was diagnosed shortly after I was born, and spend a good deal of the first year of my life bed ridden.
Posted 9/16/2015 1:05 AM (GMT -5)
If she had Lyme when she was pregnant with you than it's almost certain you got it in uterine.

Lyme can stay dormant for years and than be triggered by a health crisis, surgery, stress etc. There are many members on here who realized years later that they had Lyme most of their lives and without knowing it passed it on to their children.

You might want to either start a new thread with a title something along the line of Adult who may have been born with Lyme,help from others. Or scroll through the last 4 or so pages and look at the posts about how to treat kids. Those are mostly from parents who passed it on. If you post in one of those threads you'll get assistance. This is a very helpful group.
Posted 9/16/2015 7:42 AM (GMT -5)
Welcome thatdudefromkansas!!

Sorry for the reason you're here but, glad you found us.

Janet has already given you great information.

I can tell you that, if anything, the steroids you were given for your supposed MS could have suppressed your immune system and reduced your antibody response.

However, yYou've had enough of an antibody response that a LLMD will have no problem diagnosing you....even though Lyme and Co's are a clinical diagnosis - based upon symptoms.

Please get in to see a LLMD as soon as possible.

And, in the meantime, you might want to work towards getting a detox protocol going. All the while you've had Lyme, the bacteria moved through their life cycles. Well, when the bacteria die, they release toxins and that is what drives our symptoms.

An effective detox protocol will help mobilize those toxins for elimination. The more methods you consistently use, the better you will feel.

There are detox suggestions in the "New to Lyme" thread that include a link to this site:

www.tiredoflyme.com/detox-methods.html

We have to start detoxing slowly because mobilizing too many toxins can overwhelm the body. That's why I suggest starting now because you'll be generating a LOT of toxins once you start treatment.

Best of luck to you moving forward!
Posted 9/16/2015 7:56 AM (GMT -5)
You also have an indeterminate 39 band, which is a Lyme specific band. Indeterminate does not mean negative, it means there is something there.

So you have babesia. Also, can you give the numbers for this? Your info is not enough
"-chlamydia pn = titer not high enough for active infection"

Just because the lab said that doesn't mean it's true.

Also, which MTHFR mutation? There is more than one.
Posted 9/16/2015 9:28 AM (GMT -5)
Yes,

As for the pneumoniae lab that I didn't give results for, those weren't disclosed.  The lab only sent back the results that stated it was under a certain titer threshold, so I can't actually share those.  It was one of those things where they could only disclosed whether it was actively present or not.

They provided IgG and IgM antibody results for one, but not the other (perhaps they don't test them both the same way).

For the Babesia titer, the results were listed as 1:1024, which is a high titer.  I think for babesia duncani, the titer threshold is like 1:560 or higher, which indicates active infection.

I also listed that I was heterozygous mutation for both the 1298 one and the 677 one.

Posted 9/16/2015 9:51 AM (GMT -5)
I'm sorry to tell you this but, it seems like you're dealing with several infections. It would be best for you to see a LLMD to sort through it all. Truly, the testing for all the infections leaves much to be desired.

Certain MTHFR issues can make detoxing challenging. I'm hetero for C677T and have to take the methylated form of B vitamins.

For more information on MTHFR issues please click here:

mthfr.net/
Posted 9/16/2015 10:26 AM (GMT -5)
I'd have to agree with cd3764, you need to see a LLMD. Especially to retest for the chlamydia pneumoniae and mycoplasma, as those results don't really tell anything.

What is solu-medrol, is it a steroid? If it is a steroid, it suppresses your immune system. Doesn't appear to have affected your results.
Posted 9/16/2015 10:40 AM (GMT -5)
Yes, solu-medrol is a cortico-steroid generally used to reduce inflammation.
Which, in my case, was for the suspected MS lesions from a flare up.

However, I had what could be considered a paradoxical reaction to the solu-medrol.  Neurologists and docs all said my reaction is opposite of what they normally experience with patients.  But was generally just shrugged off as a "huh...." kind of thing.

I did initially see an LLMD at the behest of a family member, and a follow up with these results. 

He has prescribed a treatment regimen for the babesia but was on the fence about the borrelia.

From what I have read, Igenex changed their criteria for a positive result.  Previously, the 31/41 combo would be positive, and the 39/41 I have would be indeterminate because of that one band.

Now, the 31/41 is not considered positive.

Although, they havent' changed the listed criteria on their website, just on the print outs with the results.

If this were to be a very long term, chronic infection, are those results something that would be expected to be seen.  Only a few bands, possibly even a low positive?

I think the presence of the other issues: babesia and the pneumoniae infections would raise the index of suspicion for the presence of lyme as well, especially with how the igenex labs came back, showing SOME activity.

Posted 9/16/2015 3:42 PM (GMT 0)
Yes, the presence of any lyme specific band is positive for Lyme. A low positive is a positive. Your LLMD didn't think it was weird that you would have babesia and not lyme? That would be extremely weird.
Posted 9/16/2015 10:55 AM (GMT -5)
Wants to treat that now, so could be that he wants to eliminate everything else first.
Posted 9/16/2015 11:10 AM (GMT -5)
It's good that you're being treated for babesia first. Doing otherwise could impede healing from Lyme.

Your thoughts about the infection process are accurate and I hope you pursue treatment for Lyme as well at some point.

We're finding that some LLMD's (even those trained by ILADS) are becoming shy about treating in the absence of CDC positive test results. This goes against what's on the CDC website which indicates that Lyme and Co's are diagnosed clinically.

Still, LLMD's often face persecution and that could be the reason behind some of the hesitation.

Has your LLMD received training from ILADS?
Posted 9/16/2015 11:27 AM (GMT -5)
Hi Neighbor - well almost!! I'm in Arkansas.
I'm so glad you chose to join our community!! I can see that you have been give a lot of really great information, but it doesn't seem that anyone has answered your question about the steroids, although I could have easily missed it.

Yes, it will affect your results, as it lowers the immune response - which is needed for these tests. Lyme inhibits the immune system on it's own, so by taking steroids for the inflammation (likely caused by these infections), your immune system is really struggling to continue to fight the infections, and is likely why you didn't have more bands showing positive.

The other thing is that many Lyme patients (including myself) have had that "opposite reaction" to steroids. It increased my pain by quite a bit!

Your doctor shouldn't be going by what's showing up on a test, they should be treating according to symptoms as the infection showing the strongest symptoms is the one that is creating the highest bacterial load. So do be sure to help them with that! Go through symptom lists if you need help understanding what symptoms to share with them (basically any and all!), so that they can treat you accordingly - as many have found out, treating an infection that's not on top sometimes does little to help us feel better.
Posted 9/16/2015 11:42 AM (GMT -5)
Thanks for the replies, guys.

The other problem is with the current diagnosis of MS, so many of the symptoms are the same.  So the issue is which to treat.

I have read quite a bit on the links between borrelia and MS (which would make quite a bit of since in my case if it were the 100% true).

Some things would make since, like the increased WBC's in my CSF (lymphocytes specifically).  If this were some sort of chronic neurological infection, it would also make since that the bacteria and its byproducts would only be expressed in the CSF or the CNS tissue itself.

It is interesting that I have the MS diagnosis, but am also showing borrelia activity (regardless of criteria met for a positive infection).   That could be important.

It'll be interesting to see if the MS improves with the antibiotic treatments.

Anyone else have any clue about this sort of thing?  Done any research?

Posted 9/16/2015 11:47 AM (GMT -5)
We frequently have members here who were diagnosed with MS or ALS that turned out to be Lyme all along.
Posted 9/16/2015 11:50 AM (GMT -5)
Here is an old thread that has some relevant information.

https://www.healingwell.com/community/default.aspx?f=30&m=1299566
Posted 9/16/2015 11:53 AM (GMT -5)
Well, think of it this way - which one offers you a chance at getting your life back? Lyme is known to mimic MS (as well as over 300 other conditions, many of which are very serious), not the other way around. Lyme treatment could reserve much of what you deal with, and with your Mom very likely having had Lyme while she was pregnant with you, all leads are pointing to a Lyme infection. If Lyme treatments don't work, you could always go back to the MS treatments.

These articles says it better than I could: drsusanmarra.com/patient-resources/ms-vs-lyme-disease/


lymemd.blogspot.com/2009/01/doctor-do-i-have-lyme-or-ms.html


And this page is full of information:
www.lymeinfo.net/multiplesclerosis.html
Posted 9/16/2015 3:31 PM (GMT -5)
That's true.

I am currently on my MS med, but haven't found anything that states it would be detrimental if I continue if while treating for borrelia.

Probably best to play it safe and treat for both right now.

Posted 9/18/2015 10:12 AM (GMT -5)
What kind of antibiotics has everyone had success with? And what duration?

Any complete resolution of symptoms?

I am on the fence about the borrelia infection, I'm just not sure about the results.
Posted 9/18/2015 12:24 PM (GMT -5)
Well, I used all herbal protocols and have healed and had a complete resolution of symptoms. I do however have some permanent damage, but that's because of going 40 yrs without adequate treatments.

Please realize that the testing is horrid for these infections. Can you imagine if when someone had pneumonia, they had to tell them that they may or may not have pneumonia because the tests weren't accurate enough to know for sure, but go on home and don't worry about it?

Even the CDC says: "If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks. Laboratory testing is helpful if used correctly and performed with validated methods."
www.cdc.gov/lyme/
Posted 9/18/2015 3:31 PM (GMT -5)
You had ++ bands even though you were on steroids. Steroids supress our immune system. When you add in the many ways Lyme has of hiding from our immune system it's very telling at least to me that you do have Lyme and that you have had it your whole life. I understand having a hard time accepting a diagnosis when you have already accepted a different one.

http://www.holtorfmed.com/lyme-disease-evade-immune-system/ I've never read this article before looking for a concise way of showing you how well Lyme hides.

Imo the reason you haven't gotten any responses on what kind of abx's we are on and for what duration is that the combinations are all hugely varied and so are the duration's. There are members who are in remission and have stayed on here to help others. Keep in mind it's not a curable disease by definition. When you are no longer sympathetic you stop treatment but you stay on some herbs even if you were on abx's to keep your body protected from them reproducing. If you have a flare up you treat ASAP and it's resolved quickly.

The first abx's I was on was Zithromax and Tindamax. Pulsing the Tindamax 3 weeks on and 3 weeks off. That's a long pulse by most standards. Tindamax is a cyst buster. I'm never on a protocol for longer than 12 weeks. We may do that protocol again in the future but I'm switched up so my body doesn't become resistant.
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