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Posted 9/27/2016 12:02 PM (GMT -5)
I am new here and I checked out the "New to Lyme" forum.

I have been sick for the past 3 years and have only gotten worse. My functional medicine was thinking the most likely explanation is Lyme or CIRS from mold exposure as my long list of 99 symptoms fit both.

I just got my IgenX results and she said that any doc would call my IGM negative and that some docs would maybe say my IGG is positive. She is planning to go with 'negative' for now as we dive more into this mold situation, remediate and treat that and then if I do not get better then revisit the idea of Lyme.

I understand that IGG is a prolonged exposure and the IGM is a more recent exposure.

I will be getting a copy of my IgenX report when I am there tomorrow but this is what I was told over the phone:

IGG

31 KDa +
41 KDa +
58 KDa +

IGM

41 KDa +
Posted 9/27/2016 12:12 PM (GMT -5)
Hi Kklotz!
Welcome to our community! I'm so glad you found us.

And thank you for letting us know that you have already read the "new to Lyme?' thread! No need to bug you about it.

I'm not an Igenex 'expert' by any means, but you may well have mold (or other) issues, but you also have Lyme. Band 31 is Lyme specific.

An IgM result means that you have an active infection. It once was thought to mean an 'early' infection, but has since been revised. IgG means that the infection is at a later stage.

The more +'s you have beside a number, the stronger the reaction.

Did you have any "IND" results? An 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.

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.

Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis.

Band 58 is thought to be from a European strain of Lyme known as Borrelia afzelii.

Will your Functional Medicine doctor still be willing to treat you? If not, you will need to find a LLMD. We can likely help you with that if you wish.
Posted 9/27/2016 1:18 PM (GMT -5)
Hi Kklotz - welcome!

Traveler has given you a lot of good information.
Your test results show you have lyme disease.


As Traveler said - we can help you find a LL Dr.

I hope you stick around, read, post, ask questions...this is a great community of like-minded people - lots of information and support here.
Posted 9/27/2016 1:34 PM (GMT -5)
Thank you both for your quick responses. I greatly appreciate it.

I'm not going to lie....I am terrified of this diagnosis. I am on a couple of Facebook support groups and people basically feel like they are dying and just wanting to give up. I don't want that to be me. I already suffer from a severe anxiety and panic disorder so I am really hoping that doesn't get worse. It is comforting to read in so many signatures that they are no longer showing symptoms and their health is better. This makes me feel like it's not a death sentence.

I asked the nurse on the phone if I had any "IND" and she said I did not, but maybe she didn't know what I was talking about which is why I am going to get a copy to take home when I'm there tomorrow for my mold illness testing.

Couple questions:

"Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis."
**I don't have any of these things. What else could cause this? ^^^

"Band 58 is thought to be from a European strain of Lyme known as Borrelia afzelii."
**I have never been to Europe, but I'm assuming this can still be found in the US, somehow?

This may be a dumb question, but would it be safe to say that because I only have one "+", will that make it easier to treat?

My FM doc will treat me for Lyme if I decide to go that route and she says she treats her patients with herbals because the antibiotics are so hard on the body and many times Lyme is resistant and can cause people to be sicker. I feel like I'm a little bit in between a rock and a hard place with choosing to find another doctor because she happens to be my friend and I work a lot with her as she is an OBGYN also, and I am the owner of a doula agency. She is confident in treating Lyme and says she has many Lyme patients who have gotten better with her treatment. I am not entirely opposed to finding a LLMD but I am just hoping she will decide to send me to one so I don't feel like I'm leaving her.

This is just all so stressful. I have 4 small children and own a business where I am literally on call 24/7 for pregnant, laboring and postpartum women/families. I am really hoping to not have to give that up. I know I need to focus on myself and getting healthy for my kids and my husband....and myself, but if I have to quit working and doing what I love that will totally break me.

This totally took a different turn but it feels nice to get all that out. Thank you for taking the time to read this and thank you for your support.
Posted 9/27/2016 2:26 PM (GMT -5)
Well, as a mother that had very difficult labor and delivery of 2 children - I feel for you!! Being a Doula is an amazing thing though!

There are several good herbal protocols that are quite effective for most people. I would encourage you to find out what her protocol is like and post it on here and we can maybe be of some help in understanding if it would work for these infections. If she's been treating others and they have been healing well, she is likely using a good protocol though.


"Bands 18 & 41 (whether in IgM or IgG) are indicative of the tail of the bacteria, which can cross react with other Spirochetal bacteria such as Relapsing Fever, Pintas and Yaws, and Syphilis."
**I don't have any of these things. What else could cause this? ^^^

~Lyme disease.


"Band 58 is thought to be from a European strain of Lyme known as Borrelia afzelii."
**I have never been to Europe, but I'm assuming this can still be found in the US, somehow?

Yes, the ticks attach to birds that overwinter in one place and live out the summer in another can transfer ticks to other areas - any along the way. Not to mention that there is a lot of international travel these days by both humans and pets. Get infected in one country and then it can be introduced into another country by several means. More than ticks carry these infections - so say that I was infected in the US (which I was) and I had traveled to Europe (I wish!), and then got bit by mosquitoes, I could potentially be introducing the US strains into the European area where I was bitten by mosquitoes.

Take things one step at a time. See if you can lighten your load some with your business without quitting it. Maybe hiring someone else part time for a while will be enough.

And no, this is not a death sentence! You know you have it and will be addressing it, so the odds are with you that you will heal and be able to go on with your life!
Posted 9/27/2016 3:53 PM (GMT -5)
Welcome to the forum. So sorry you are here. Please know that we are here to answer any questions you may have to the best of our ability.
Posted 9/27/2016 6:11 PM (GMT -5)
Welcome kklotz121,

If you have mold, it is best to treat it first. Mold can really put a damper on Lyme treatment.

I'm sorry you're stressed and overwhelmed. Take one step at a time and just breathe. I would recommend finding a Lyme Literate doctor. Knowledge is power in treating Lyme and Co.

Don't compare yourself to others when it comes to treatment. Everyone is so different. Let us know if you have questions or if you need help finding a Lyme Literate doctor.
Posted 9/28/2016 12:23 AM (GMT -5)
Welcome sorry ..band 41 means flagella ..and no good bugs have tails
Posted 9/28/2016 6:51 AM (GMT -5)
See how far you get with mold treatment. Often these are pieces to the puzzle. Generally, none of us here have "just lyme." I think it's the combo of those things contributing to the illness. Lyme can be a major piece, but so can mold, metals, parasites, coinfections, viruses, genetics, thyroid, diet, and more.
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