My Lab test results

[BeatingRA]

Hi everyone,

I’ve been in an RA flare for about 6 months now. Last time I flared it lasted 18 – 20 months. I mentioned in another post a few weeks ago that I had just started going to a Nurse Practitioner at an Integrative Medicine practice. I had many tests done in October and received the results at my visit last week. I have 10 pages of test results but here are the highlights:

Lyme testing by Igenex – negative
– IgM band 41 IND, everything else –
– IgG band 39 IND, band 41 ++, everything else –
– the co-infection tests that they ran were all negative

Allergy testing – on a scale of 0 – 4 I am a 1 on the following foods
– almonds (knew this because whenever I eat them I feel my heart racing)
– avocados (love them)
– cocoa (oh, no, not Chocolate!) 😥
– crab (love it)
– garlic (how can that be? I’m Italian!) 😆
– gluten (well if I can’t have garlic, I might as well skip the pasta too) 😀
– pear (not one of my favorites anyway)
– strawberry (love them)
– wheat (suspected this because of heart racing after I eat it)
– bakers and brewers yeast
Gluten, wheat, yeast and almonds had the highest scores.

My celiac test was negative.

Thyroid – she had me check my temperature 3 times over 3 days and it averaged 97.4. She is going to start treating thyroid at my next visit on 11/30.

She put me on a gluten free and candida diet. I’m easing myself into this but I’m struggling. I think I’ve been doing a fairly good job of avoiding gluten but I know there is hidden gluten in a lot of foods. I need to find out how to find it and avoid it. Fortunately I cook from scratch most times and avoid processed foods as much as possible. And, I always read the nutrition labels. I’m finding it much harder to avoid yeast. I bought Udi’s bread and love it but it has yeast in it so need to find something else or just quit eating bread altogether. I’d love to hear from all you gluten and/or yeast free folks out there.

Another thing I’m struggling with is how to feed my family (DH, DD 13, DS 11) without forcing my new diet on them.

I’m also on many supplements, plus Diflucan and still on minocin MWF. I don’t have time to list everything now but plan on starting a personal progress thread and will list them there.

Theresa

[Maz]

@BeatingRA wrote:

Hi everyone,

I’ve been in an RA flare for about 6 months now. Last time I flared it lasted 18 – 20 months.

Lyme testing by Igenex – negative
– IgM band 41 IND, everything else –
– IgG band 39 IND, band 41 ++, everything else –
– the co-infection tests that they ran were all negative

Hi Theresa,

Just wondering if you have remained on the 100mg mino MWF since starting AP or if you have done any tweaking of dose? Also, have you ever considered doing IV clindamycin? Brown would do IVs when patients were in a backslide in progress to provide a bit of a boost. Also, dosage changes in mino can sometimes work wonders. I was talking with a lady a couple weeks ago who wasn’t improving much after about 6 or 7 months on low dose AP and Dr. F in CA increased her dose to a whopping 300mg per day! Herxing may yet come, but the mega-increase in dose seemed to bring down disease activity almost immediately, last I heard. Some folk just seem to do a lot better on the higher daily dosings while others are just too hypersensitive. This is where working with an experienced doc can make all the difference, even if the dosage adjustment upwards is only a temp measure to knock out a flare. If it would help, I can send you Dr. S’s contact info in Iowa and he may be able to offer some experienced insight via email with you or to consult with your new doc on how you can adjust your dose to get some results. Flares that go on for too long are a strong indicator that the dosing isn’t right and sometimes even that a second abx might need to be added.

This might interest you….when I got my IGeneX labs run, about 3 months after I had 2 bulls-eyes (not everyone gets the rash), I also had a very weak showing of bands on these labs. A rash = Lyme no matter what labs say, but I only showed up positive on Bands 39 and 41 with one + on IgG (past infection) and only Band 23-25 on IgM (present infection). Band 41 isn’t all that significant on its own, even though it is a double-starred band, because it is a marker for antibody produced against the flagellum (whip-like tail) of the spirochete, but there are a number of spirochetes out there (oral and H. Pylori, for e.g.) that can cross-react with this band. It does, however, become pretty significant when matched with borrelia-specific bands, like Band 39. In the context of IND (indeterminate) bands, some anti-body is showing up, but just not enough for a full positive…in other words, one can’t be just “a little bit pregnant.” Some antibody is reacting to that specific protein of the spirochete, so there must be something there.

If you check out this link, it will explain a bit more for you:

http://www.lymenet.de/labtests/brenner.htm

“1. the first band to show up on a Lyme disease patient’s IgM blot is usually the one at 41 kDa,
2. followed by the OspC band and/or the one at 39.

The OspC and 39 kDa band are highly specific for Bb, while the 41 kDa band isn’t. That’s why the 41 by itself isn’t considered adequate. Here’s the rub, though: the CDC doesn’t want the IgM criteria being used for any patient that has been sick for more than about six weeks. The thinking here is that by this time an IgG response should have kicked in and the IgM criteria, because they require fewer bands, are not appropriate for patients with later disease.”

And if you check out Dr. C’s explanation of the western blot (LLMD in MO), he discusses the importance of Band 39 and IND bands:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=042077;p=0

“39: Unknown what this antigen is, but based on research at the National Institute of Health (NIH), other Borrelia (such as Borrelia recurrentis that causes relapsing fever), do not even have the genetics to code for the 39 kDa antigen, much less produce it. It is the most specific antibody for borreliosis of all. “

And on the IND bands:

“Many would say the ” +/-” equivocal [“IND”] bands are not significant. The problem I have with that, is that there are “-” negative bands. The lab has no trouble calling some bands negative. So they must be seeing something when they put “+/-” at some bands.

The only thing that makes sense, is that there is a little bit of that antibody present in your serum. If the “+/-” equivocal is reported on the borrelia associated bands, it is usually significant, in my clinical experience. This is a strong clue that I am on the right track.”

The crazy thing about Lyme is that it not only has cloaking mechanisms to hide from the immune system (hence body can’t mount enough antibody response), but it actually hijacks immunity so that many of the sickest patients can’t produce enough antibody to test anyway. 😥 This is where the CD57 test is helpful, because this test provides good indication to lowered immunity and and is also highly specific to the cause being from Lyme. This test can be run through LabCorp, so if you wanted to check the state of your immunity in the context of Lyme, this would probably be a reasonable next step in light of showing such suspicious antibody on Band 39. Everything you’d need to know about this test and how to have it run is explained at the following link:

http://www.publichealthalert.org/Articles/gingersavely/everything%20you%20always%20wanted.html

Interestingly (but more of a pain for Lyme patients) is that because Lyme really messes with immunity, these patients often find they become hypersensitive to a lot of environmental triggers – foods, scents, soaps, molds, chemicals, etc. Some are so badly affected that some LLMDs actually have rules about not wearing any perfume or using strong soaps or washing detergents prior to an office appt as their other patients are just so highly sensitized.

Food sensitivity testing is a funny old business, too, because I was told by a holistic doc that sometimes a person will show up weakly positive for a specific food, but it’s just because they’ve been eating a lot of that food lately. So, he would recommend cutting out those foods for a short while and then re-testing for a more accurate gauge. It never hurts, though, to eliminate suspicious foods in one’s diet and gluten, starches, simple sugars and dairy seem to be the biggest offenders.

Hate to say it after the fact and have doled out so much money for the coinfection panel, but these are notoriously inaccurate, even through IGeneX, which is why most folk just start out with the western blot to save money. A good LLMD would be able to clinically assess for symptoms that seem suspicious of particular coinfections and would treat with therapeutic probes accordingly.

All this said, I’m just a fellow patient and can’t tell you if you have Lyme or not and to get to the bottom of the Lyme mystery may need the astute eye of a really good LLMD who would assess you based on your clinical presentation and history. The CD 57 test may also provide more definitive clues.

I hope something above may help, Theresa! If you’d like Dr. S’s contact info to discuss tweaking your protocol with him, let me know and I’d be happy to send that info. He’s such a kind old physician, helping APers freely like this. 🙂

[BeatingRA]

Maz,

I played around with my mino dose a lot when I was flaring in 2005 – 2007. Once I was in remission I dropped down to the 100mg per day. This time when the flare started I increased my mino to 100mg 2x per day but it was too much for me, I couldn’t handle the herxing. I ended up going back to MWF but taking 200mg and that’s where I am right now.

Thanks for your thorough reply on the Lyme and allergies, it certainly has given me a lot to research. The practice I go to has those rules about perfumes and scented soaps too.

Theresa

Edited to add: yes, please send Dr S’s contact info. Thanks!

[Maz]

@BeatingRA wrote:

Edited to add: yes, please send Dr S’s contact info.

Okay, will do.

What are you doing in terms of detoxing, Theresa, if that’s okay to ask ❓

[Krys]

Hi Theresa,

I’m not recommending anything.
But I think that I had stumbled upon a useful way to make the infection show up on the IGeneX Lyme test.

2 months before my IGeneX test, while waiting for my first visit with an LLMD, I started taking Poke Root and Red Root for lymph cleansing. I did it “out of blue”, deciding that that’s the only thing I had not tried. About 10 days into those 2 herbs, I woke up with a picture perfect bull-eye (no tick!!!) and 2 additional small ones developing on the other side of the thigh!!!
When I finally took the test, I had all but 1 out of 75 symptoms as described on page 2 in http://www.endowmentmed.org/pdf/updatelyme.pdf and my Lyme test still came out mere one + / Ind. on #31, #34, #41 and #58. I feel that if I had not done the lymph node cleansing, possibly no bands would have shown up.
Surprisingly, a computerized assessment on a machine with pre-programmed bacterial / microbial infections, done a few months earlier, showed 82% Lyme.

I am very much “frain bogged” right now, so please excuse my inability to back the following with a link.
I remember reading somewhere that spirochetes often hide in the lymph nodes, so I’ve been thinking that the herbs for clearing the lymphs did bring them out! Krys

[maz.aust]

Hi,

I believe most of us are gluten/sugar free if we are diligent about what we should be doing and yes the hidden gluten is the killer in all this — what I did was print off some of the most common hidden gluten products & kept the list in my bag to take with me when I went shopping until I started to remember or had the time to read every package before I bought it. Hope this helps?
http://www.gluten-free-for-life.com/hidden-gluten.html

As for my family – everyone in my house is unknowingly on my gluten free eating regime, except my 6 yr old grandson who still needs yeast, sugar etc .. my attitude to all this is if I don’t have it in the cupboard I won’t eat it…. however I do eat pasta & bread once a month & boy do I love that day, even though I know I will pay for it tomorrow.

Cheers,
Maz.Aust

Dec07: Diagnosed PRA, (CTD; Fibromyalgia; suspected Lyme):
Mar08: Diet to heal gut/bolster immune system (no gluten, dairy, sulphites or sugar)

Jan 2018: ABX Mon/Wed/Fri (started AP 2008)
1/2 x 150mg Roxithromycin(Biasig), 1/2 x 150mg Clarithromycin (Klacid),
1/2 x Fungillin, 1 x 250mg Cephalexin (Keflex)

All off days Probiotics

[crowchez]

Theresa,

To address your diet questions, I’m gluten free & it was easier for me to concentrate on what I could eat rather than what I couldn’t. The http://thepaleodiet.com/about/http://www.marksdailyapple.com/definitive-guide-primal-blueprint/ community is huge & there are some awesome cooks out there who post their recipes on their blogs. Two of my current faves are http://www.lifeasaplate.com/ and http://www.health-bent.com/ but there are many more. (I am now drooling.)

What I like about the paleo/primal approach vs a gluten free one is that it’s much closer to what we want to be eating. Not just swapping one set of carbs (gluten) for another (rice, beans, etc) but concentrating on protein & fat (good fat). For me, this way of eating is awesomely delicious & I don’t miss bread or pasta at all. So your family might not miss it at all either. It’s good that you usually cook from scratch because that was a big adjustment for me. 😆 Now I’m a pretty good cook!

[Patricia.Ann]

Crowchez – thank you so much for those brilliant links and the fantastic motivating advice to ‘concentrate on what we can eat rather than what we can’t’. Looking at it from a different perspective helps enormously 🙂

Diet is my next thing to look at and this couldn’t have come at a better time 😉

Heartfelt thankyou.

Patricia x

[Valsmum]

I had a lot of suceess with the no starch diet and paleo diet recently,in the last 3 months I have done the diet very strictly & my sed rate dropped from 54 to 37. I feel a lot better, but I hope it drops another 10 points and gets into normal range.

My diet consists of chicken, turkey, fruits and veggies -no nightshades. For me this new diet has been the biggest form of pain relief.

Hope you get feeling better.

Take care!

[BeatingRA]

Thanks everyone for your responses. Sorry for my late reply, I’ve been away from the computer for a few days.

Maz, All I’m doing for detoxing is the whole lemon/olive oil drink.

Krys, that’s really interesting about those two herbs causing the bulls eye to come out.

Maz.Aust, yes, that link really helps. I like your idea of printing off the list and bringing it shopping with you. I’m going to try that. Bravo that your family is also unknowingly on your gluten free diet. I hope to get to that point too.

Crowchez, focusing on what you can eat rather than what you can’t is a great idea. I’m kind of overwhelmed right now trying to sort it all out. I love reading cooking blogs and websites, I’ve seen a few of the ones you posted and will check out the others.

Thanks again.
Theresa

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