Help Interpret My Igenex Results

Hi simplecfs - welcome to our community.

Well my opinion is what is causing your CFS?

Lyme could be...and you have enough of an antibody response to look into Lyme as the cause.
Bands 31 and 39 are significant - and even though you had IND - it is a response. We call them "weak" positives.

You should find a LLMD and schedule an apt for an evaluation.

LL = Lyme Literate.

We can help you find one - just start a new thread titled: "Looking for LLMD in/near _________"

The bad news is it looks like you have Lyme disease. The good news is you can now treat your "CFS"

Often those of us with lyme have low NK cells...and some LLMD's use that test to gauge improvement.
But, many LLMD's don't use it because it is often not reliable/accurate.

I have read high HHV6 titres is common with lyme disease.

Hopefully some members with more knowledge about HHV6 will be on to post.

Hi Simplecfs,
Welcome to our community! I'm so glad you found us and are checking into this further.

Your test results indicate a Lyme infection:
Bands 31 and 39 are "Lyme specific". A "Lyme specific band" means specific for Borrelia Burgdorferi, sensu stricto - Lyme disease in the strictest sense. There are only two on the over 300 known strains of Lyme that is considered Bb, ss. Borrelia burgdorferi and Borrelia mayonii. Nothing else will turn a Lyme specific band positive other than Lyme disease - - even though there are over 100 different strains of Borrelia in the US that cause human illness.

IND means indeterminate - not negative, but not quite strong enough to be "fully positive". But it means that you reacted on those bands and should be considered, especially when they are Lyme specific bands.

And that's not all - Band 58 is likely from a European strain of Lyme, known as Borrelia afzelii.

There simply is no "right" symptoms to have Lyme. It may be only fatigue, it may only be psychological symptoms, or arthritic symptoms only or any other type of issues.

The other thing to think about is that there is no cure for CFS, yet if you treat Lyme, you could heal, but would at least feel better. So why NOT try treatment for these infections?

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. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html Detoxing for us is an incredibly important part of our healing.

For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.


​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 (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals.


You can 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/

And www.LymeDoc.org


​ You will want to find a well trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs 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:
www.lymenet.org/BurrGuide200810.pdf

You will need to take high dose (50,000 - 100,000 units) of high quality probiotics and eat very, very healthy in order to protect your gut, but it's worth it if you can get to a point of feeling better, right?

Herbal protocols aren't quite as hard on the intestines, but you would still have to use large doses of high quality probiotics, as any antimicrobial will destroy some of the good bacteria in our intestines.

I talk with a member that has had to deal with massive MCAD flares for quite a while, so I do understand your concerns. I would encourage you to find a doctor that understand MCAD - or do a ton of research- and learn how to live with this potential issue. The most important things are to not only to learn how to live with it (basically avoidance of triggers), but what to do during an MCAD flare should you have to go to the ER. Very few ER's know how to properly deal with an MCAD patient.

But, since you aren't confirmed for MCAD yet, maybe you don't have it. A Herx (Herxheimer reaction, Jarrisch-Herxheimer reaction) is essentially the beginnings of an MCAD reaction, so maybe that's more of what you are dealing with? I hope so.

Yes!! Post exertional malaise is very much a Lyme thing! And I hate it!!! It keeps me from doing a lot of things.

I don't know much about LDI treatments, other than they don't work for everyone. Some do find a lot of relief with it's use, but others don't do well with it at all. From what I've seen on this forum and other places I visit online, there's more that don't do well with it than those that do. The thing is, if it works, it's a game changer for many.

Welcome to the forum. Sorry that you had to look for us, but you are in the right place. You will find a lot of good information on this site and nice friendly members.

Welcome again!

CFS is a catch all phrase. Most doctors don't like it because it really doesn't explain WHY. So to your question, yes. You now know partly why you are chronically fatigued. And my money is on traveling co-infections and virals. Reactivated viruses such as EBV, HHV6 are primary fatiguers.

Ok I'm in!

As far as the LDI I'm scared to take it again after 22x didn't change my reaction. I didn't have what he said would be a 6 week bad reaction , it still sucks after taking the initial dose. you think I should take even lower dose? what's the best herbal protocol people are doing these days.

When I lived in nyc with my "CFS" I actually went to the Zhang clinic where he treated Lyme people with garlic allicin. So I tried his allicin for 2 months , it's hell smell wise but I never herxed on it or improved.