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Hi Tom,
No expert here, but I'll chime in anyway. Please see Maz's post to Kash about her Igenex results.
Dr. C. feels the important bands are:
“In my clinical experience, if a patient has symptoms suspicious for borreliosis, and has one or more of the following bands, there is a very high probability the patient has borreliosis.
These bands are 18, 22, 23-25, 28, 30, 31, 34, 37, 39, 41, 83, and 93.”
All of the bands you hit on are significant and, in my opinion, enough to warrant Lyme tx. It would also explain why you stalled out on your current RA tx.
Take care…..kim
Hi Tom,
Agree with Kim…think it would be a good idea to call Dr H of IGeneX and speak with him about your results further. As Kim said, the bands you hit on, even if IND, are pretty specific ones.
The bands I tested a + on were 39 and 41, which gave me a positive IGeneX result by their criteria, but not on standard testing – even though I had Lyme rashes, which are definitive for Lyme regardless of what tests say. You're also showing sensitivity on both those bands, too, though just an IND on 39 at this stage on IgG…it means you have some antibody, but just not enough yet for a fully definitive, positive result.
Peace, Maz
Because you do not have two positives (+) in the double starred bands, your Igenex tests are negative. However, like so many of us, that may not mean anything.
I was IND for band 31 IgM, the same as you, and only had band 41 as positive. Dr. H. of Igenex recommended an additional test, the 31 epitope, which resulted in a positive. Every lyme test I've ever taken has been negative. I was shocked when the 31 epitope was positive.
If you feel like you are stalled on AP treatment, and your symptoms match some of those with lyme and co-infections, then my recommendation is to see an LLMD for further evaluation.
Looks like you may be another groupie in our lyme club:sick:
nancyWhat exactly do I do? Call some guy from Igenex and he will just go over my results for me?
The first time I called them to ask for the test I asked them the question you told me to ask “for input on what strains of borreliosis and which coinfections are prevalent in Ohio” and the lady was like “What? Um.. You'd have to ask your doctor about that.”
Being I had no idea what I was even asking I just said OK.. :roll-laugh:
Dr. H. is the President of Igenex, and he is most gracious in taking the time to talk with patients, on Mondays and Tuesdays, about their results.
I completely understand how frustrating and confusing this all is. You wait for the results, and they turn out negative, and yet you may still have lyme or co-infections.
Dr. H will give you his recommendation, if you should run the 31 epitope. The 31 epitope is just a single test that your requesting physician can fax to Igenex. They use your stored blood for the test, and the cost is $100.
So wait until Monday and call them and ask to speak to Dr. H because I wanted more information regarding my results?
Man, this is like finding out I had RA for the first time.. Like getting hit with a ton of bricks.. Now I'm scared to start a different tx for fear of what it brings! 🙁
There are a lot of us that feel the same as you, if that makes you feel any better.:(
The only thing I can say, is that you must have requested lyme testing for a reason. If you are doing great on AP alone, I wouldn't do anything more. However, if your treatment is stalled, or feel you have additional factors contributing to RA, then continue to take the steps to uncover what that might be.
I felt lousy on AP alone, and knew there was more to my illness. My LLMD is peeling one layer at a time; with each new protocol, there has been some improvement. As scary as it seems to start lyme treatment, I have been able to tolerate the heavy antibiotics with few side effects. The truth is, you may not have have lyme, but you could have other undiagnosed infections or parasites. Ultimately, an LLMD is the only doctor that is willing to pursue and treat these complicated cases.
nancy
So regarding Lyme.. If I do indeed have Lyme does that mean I don't actually have RA? That the lyme disease is causing the joint pain or causing the RA?
Is lyme treatment indefinite or is it possible to be “cured” ?
Thanks everyone!
Hi Their,
It nice to meet, sorry about all this confusion. I am also R/A positive, A MD L from MD F's. office is one that first told me he tought I had LYME R/A.
Lyme induced R/A has been brought up but I do not recall which MD said that to me.
Like you, I also have bands 30 and 31 come up. My Lyme has always said she see's the Euro strain in myself. Their is alot of Lyme consultants that believe 30 has something to do with the Euro strain.
Do you have a Euro background at all?
Hugs, Roz
Nope, only left the US one time for a cruise.. Other than that spent most of my 31 years (32 in 2 days :D) in Ohio..
[user=27]Maz[/user] wrote:
…gave me a positive IGeneX result by their criteria, but not on standard testing – even though I had Lyme rashes, which are definitive for Lyme regardless of what tests say.
Hi Tom–
My results were similar to Maz's and I also had the Lyme rash. You are young (happy birthday in two days :)); I think it would be wise to see an LLMD with your Igenex results; better to put a halt to the bacteria now and I believe because of your age you will recover quickly.
I, too, have Lyme triggered RA; I don't think one ever gets rid of all the Lyme, just lowers the load until the immune system can keep it in check.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
Thanks Trudi!
Only thing I'm worried about is going off AP to go on a lyme protocol.. I mean, I think the lyme protocol does use a lot of ABX but if I don't truly have lyme and I go off AP then I guess I wouldn't be treating my RA..
Then again, I feel basically the same since being on AP for a little over a year so maybe it's time to switch things up anyways…
[user=851]tbird2340[/user] wrote:
..I mean, I think the lyme protocol does use a lot of ABX but if I don't truly have lyme and I go off AP then I guess I wouldn't be treating my RA..
Tom, your results indicate a history with Lyme. I'd have to check, but I think many add Lyme treatment to their current regiment. I have to warn you, though, stirring things up can give you added grief. This is good for the long haul, not such fun during the herx.
Decisions, decisions!! I second-guess myself often–then I feel much better and some bloodwork (no more anemia, the last one) is proof I'm heading in the right direction.
Take care,
Trudi
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
I agree with everyone–see an LLMD because you can't rely on blood tests alone. I never tested “CDC” positive for Lyme but, I certainly had many clinical manifestations of it, and feel better since I added the Lyme abx to my SD protocol. I didn't realize my lyme abx was helping until I had a moment of temporary insanity, when I decided to stop all my Lyme meds for 30 days. I was having a severe episode of itching, and I thought maybe I was reacting to one of the meds. Then, I started to feel my joints aching, pain in my body, skin tightening, etc…which all went away about a week after I resumed my lyme protocol. That convinced me that I definitely have Lyme disease.
You certainly may stir things up, and it's possible you will flare some things but, in the long run, it's worth it. I feel better knowing that I'm treating the various infections and co-infections, and doing things to help boost my immune system. Ultimately, the goal is to get my immune system working the way it was before I got sick so that it will be able to keep the various infections in check.
The best of luck to you,
Maria
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