Lyme results in,Lyme lit. friends please opine….

[Bill]

Hello Friends

Got back the results of my Igenex test a several weeks back. I have been doing my homework however I’m still not quite sure what to think of it. My GP is kind and helpful but does not know much about any test that does not meet CDC parameters. I get the vibe the whole Lyme thing is maybe pushing her past where she is comfortable in going…..

IGM – hit double star on band 41. Indecisive on band 34.

IGG- single star on band 41.

So CDC negative however………

I have read the Lyme m.d. Blog and many other things and it sounds as if 41 is a significant band even on it’s own. I understand that IND on an igenex is pretty much like a positive. Hmm…….

A couple of complicating factors here. I did not go off the mino at the time of the test. And when I called for instructions they told me the drawing lab would know what to do. They did not. They just gave me whole blood and not serum. I shipped it overnight, then realized I should have sent serum. I wanted them to send me another kit and toss that one but they felt that it was ok to centrifuge when they received it. I really wanted to have a proper draw of serum but they insisted that the blood was good enough to centrifuge when they received it. So now I’m rather uncertain of the best next step. I have learned that it may have been best to do a challenge by doing mino 2 or 3 times per day for several weeks and then stop for 2 weeks before the test. So my questions are for those who have an opinion 1. Does it sound like I blew the test by improper procedure?? 2. Does the 41 band hit in spite of it seem significant?? 3. Is it likely that if 41 showed up with mino and an improper draw along with an IND 34 that a proper test may show more? 4. Would the mino challenge followed by the mino abstinence likely be more telling in your opinion ? Does what I have suggested seem to be a proper challenge and a more proper way to go about it??

I would greatly appreciate any informed speculation or opinion on this by our LLF’s (lyme literate friends) 😎

Thank you all for all the help as I continue to go down the path of leaving no stone unturned. By the way my blood work is amazingly improved after 2 years plus on the mino.

Ra -3 years 200mg. mino mwf. Serrapeptase,nattokinase,curcumin,quercitin,green and black tea, ect… good whole food and fresh juices.Plenty of sleep at night.

[Kim]

Hi Bill,

I can’t comment on whether your blood sample was compromised and affected the results of your test, but Band 34 is very significant (it is one of the outer-surface proteins used in making the Lyme vaccine). Here is an excerpt from Dr. C.’s explanation of the Western Blot. Remember Lyme is primarily a clinical diagnosis.

“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. “

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

Let us know if you’d like the list of Lyme docs (LLMDs) for your area.

Take care…..kim

[lynnie_sydney]

Hi Bill, nice to see you at the new forum site! I’ll leave the Lyme technical answers to the people who are well versed in this side of things. However, thought I’d mention something else. I notice you’ve put your dx and treatment regime at the bottom of your post. Info for your signature (which will come up every time you post at the bottom) is a little different in this software.
Click on your user control panel above left. Click on profile then click on edit signature then input info. Lynnie

Be well! Lynnie

Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

[Bill]

Kim

Thank you so much for the response. I appreciate it. Yes I think I should get that list.

Lynnie

The pleasure of being here is mine. You have all done such a magnificent and important job with it. Thanks for the info. I will add that line tonight, Thanks again.

[Kim]

Hi Bill,

Sent you the list of LLMDs in a PM.

Here is another link to help you better understand the results of your Western Blot test.

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

Take care…..kim

[nspiker]

Hi Bill,

My Igenex test was also only positive on band 41, and IND on a few specific bands. Mine had a few more IND’s than you show. I would recommend you call Dr. Harris of Igenex. He takes calls, if I remember correctly, on Monday and Tuesday. He can answer your questions on the blood and test accuracy, and give input on your results. He recommended that I get an additional test, a 31 epitope, which was positive and confirmed lyme exposure.

In regard to antibiotic provocation and going off antibiotics prior to testing. I did not stop antibiotics prior to testing, and many on this board did not. Some LLMDS prefer provoking the immune system to get a positive response. I don’t know that it’s that important.

Band 41 can cross react with other bacteria and viruses. So, based on your test, it doesn’t scream lyme, but lyme is ultimately a clinical diagnosis. If you’ve improved significantly on minocin, why pursue additional testing? Are you still having symptoms and suspect lyme?

Let us know what you find out…
nancy

[suera]

I’m sorry to horn in on this post but I was looking thru my bloodwork just last night and I don’t understand this Lyme stuff at all 😥 For 41 it says REACTIVE, should I be worried? The doctor I went to didn’t seem worried, he said I probably didn’t have Lyme. Since I have some other problems right now I put it on the back burner but maybe I shouldn’t have.

[Patti D]

I also hate to horn in on this post but I am doctor shopping right now and my hubby wants me to try his doctor who is”intrigued” by lyme disease and was asking all kinds of questions if my elisa & western blot results were positive. Obviously early on I was negative on both, so the question remains what the heck do I have 🙄

Thanks Kim for that western blot article. I made a copy. My question is it has been 3 years now. Should I repeat the blood tests for lyme for my new doctor. After all, if I try my husbands doctor, he is intrigued , 😮
Patti

[Maz]

@sue/ra wrote:

I’m sorry to horn in on this post but I was looking thru my bloodwork just last night and I don’t understand this Lyme stuff at all 😥 For 41 it says REACTIVE, should I be worried? The doctor I went to didn’t seem worried, he said I probably didn’t have Lyme. Since I have some other problems right now I put it on the back burner but maybe I shouldn’t have.

Hi Sue,

I’d only be worried if it’s a standard test, because they’re so awful….they are missing critical antibody bands and their specificity is somewhere around 50%.

Band 41 is a double-starred band, so it’s important and relevant, but only in relation to other antibody bands that may be showing up, because it is a marker for the flagellum (tail) of a spirochete. There are plenty of spirochetes out there, though…heliobacter pylori (can cause RA), syphilis (can cause RA), oral spirochetes (can cause RA) and Lyme (can cause RA). However, you probably won’t know which one without having an IGeneX lab run (unless this test was IGeneX?), which is more sensitive and includes antibody bands that were removed when they were creating the LymeRix vaccine and never replaced. These antibodies are so specific to Lyme that they didn’t want cross-reactivity with those who’d received the vaccine to those who were infected. The vaccine ended up being pulled off the market – they said due to poor sales – but there were many who had the vaccine who came down with RA. So, anyone who has the standard Lyme test won’t know if they test positive on some of the more significant bands (like 31 and 34), because these were never replaced on the test. In combination with Band 41, these two bands would pretty much point to Lyme. Without them, this is likely why your doc isn’t too concerned about Band 41….on it’s own it’s a bit of a meaningless band, as it can be due to other spirochetal infections.

If you check out Bill’s results above, for example, his Band 41 is significant, because he’s also showing up with some antibody on Band 34 (one of the bands that was removed from standard testing). In his case, therefore, it’s worth checking in with a LLMD to also get himself checked for coinfections of Lyme that may require totally different antibiotic treatments.

Hope that helps to explain a bit further for you, Sue…I know…what a complicated business, eh? These two links may help to explain more, though:

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

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

[Maz]

@Patti D wrote:

My question is it has been 3 years now. Should I repeat the blood tests for lyme for my new doctor. After all, if I try my husbands doctor, he is intrigued , 😮

Hi Patti,

Can’t remember, did you have an EM rash? If so, EM = Lyme, regardless of what labs say and so it’s probably not worth having tests re-run, except for curiousity’s sake. Some folk produce more antibody over time, but it’s also possible that since you’ve been on antibiotic therapy for a few years now and in a near remissive state (except for your RF and anti-CCP?) that your Lyme has gone into a quiescient state and you aren’t producing much in the way of antibody for the test. Hard to tell…point is, though, once a person has Lyme, they always have Lyme, as they’ll always carry a piece of the organism around with them. It’s the same for any infection. It’s sort of like getting chicken pox as a kid and then shingles later in life….the virus is still there and age or some stressor will re-activate the latent infection.

One of the major probs with the whole Lyme thing is that “Lyme” is a pretty catch-all term…”borreliosis and associated tickborne infections” is really what is meant. More often than not, the sickest patients with Lyme are coinfected with other tickborne infections, like babesiosis, bartonellosis, erhlichiosis, mycoplasma, etc…and there are many strains of some of these. So, knowing if one has “Lyme” is quite important, because monotherapy with a low dose tetracycline isn’t going to be enough for most “Lymies.” I may have told this story before in this context, but a lady I spoke with in MA last year had been on AP since the early 90s. She’d bumped into Diane Aronson, the then Pres of RBF who told her about Dr. S. in Iowa and to whom she went to see to begin AP. A month prior to coming down with RA, however, she had what her GP told her was a “spider bite,” which she now knows was a tick bite due to the expanding rash she had at the time. She didn’t think anything more of it and managed to reach remission on AP with intermittant IVs. She then came down with breast cancer and had to go thru chemo, which caused her to relapse and she was unable to re-acheive remission on low dose AP. She went to see a LLMD in NYC who diagnosed babesiosis and began heavy treatment for this coinfection of Lyme. Meanwhile, he sent off her labs to IGeneX. Interestingly, her Lyme western blot returned entirely negative, but she showed up highly positive for babesiosis! His clinical diagnosis was right on the money. Within several months, she was back on track and nearly back into remission. 🙂

That may not answer your question and Kim might have better insight for you, but just thought to mention this in case something might help in your decision. 😉 Patti, so happy to hear you’re doing so well! Let us know how it goes with your hubby’s doc, if you decide to go see him. Have a wonderful holiday season with your lovely family and a happy new year to you that is filled with lots of love, health and happiness.

[Kim]

Hi Patti, (sorry Bill ~ but this thread is so horned-in on already I’m sure you won’t mind one more 😆 ).

When I asked my LLMD about re-testing he said it wasn’t necessary, so if you’re taking a poll that’s my story. 😉

Take care…..kim

[Patti D]

Thanks Maz,
I do have an appointment with a LLMD, actually it is Trudis doctor. My health insurance has changed now to an HSA so after the new year everything is out of pocket, unless something catastrophic happens . The problem is the soonest I could get in was March 8th which leaves me with a problem with my prescriptions running out. I have enough mino its the Armour I don’t have enough of.
Trudi chime in here, actually uses 2 lyme literate doctors. The one here close to my home is also an expert on thyroid 😎

If I do see my hubbys doc in the interim I for sure won’t be wasting $400.00 out of pocket for another western blot. He has an infectous disease doc in the building 🙄 too where as Trudis doctor is opening up a new clinic which has an environmental doctor in her practice. That fits my scenario much better.
I did not have am em rash at the onset of lyme but did have many of the other symptoms not to mention an arm full of nymph stage ticks(Warm, April, Exposure) I honestly don’t know what to think as 2 Western blots were neg and the lyme titer 3 times was negative. I don’t know if this joint pain was causes by periodontal disease, lyme, stress etc. And yes, I still want to know what tipped the scale. 😆
New year, new evaluation. Hope you are well Maz dear sista and that you enjoy the holidays too!!! 😀
Patti

[Bill]

No problem Kim the more the merrier ❗ All this information is helpful to me and others as well.

Nancy,
Thanks for the very intuitive answers to my questions. Those were largely the questions and concerns I had. Very helpful.Your correct the mino has been a life saver. It has brought me very far back down this road back. When I first got hit with this thing it was like a train in the night. My RA factor, sed rate, and crp were totally off the charts high, some of the highest numbers I have seen. Oh yea ANA was positve as well. I was literally on fire. Now these are all in normal range with neg ANA. Ra fluctuates a little between negative and 29. It was 796 😮 My knees were hit hard, as well as shoulders, wrists, hands, toes. But especially knees. Incredible attack on them more pain than I’d ever known. Totally swollen. Feet swollen, had to wear sandals. Fingers starting to get that crooked RA look.ect……sleeping 14 hours a day and wanted more 😥 Total brain fog, difficulty in concentration. ; ect…ect…ect…Was offered participation in clinical trial; methotrexate, 120mg infusion prednisone 😯 along with infusions of a new drug that takes out part of the immune cells which may or may not return some day. I said thanks….. but no thanks. I think the sickest day I had was at that rheummies office. I swear I could feel infection in the air…. Got serious chills which is rare for me. But one thing I noticed was everybody looked sick. The nurse’s looked sick, the Doctor was no picture of health and the patients looked worse. To top it off the chairs were some skinny, hard rod metal things that seemed more suitable to some midieval dungeon than an office that truly cared for it’s suffering patients. Plus it had the aroma of yesterdays drug rep catered meal. It was not the clean antiseptic place it should have been. This Doc was listed by a major magazine as perhaps the best in his field in this large state.. ??? But the whole experience just screamed no intuition wise. So I studied and studied and pondered and pondered over the various protocols. I pondered a little too long. But I wanted to get it right. You know to pulse or not to pulse ? MP or Ap? Mino or Doxy? Jump off a bridge or stick my head in the oven ?….. Just kidding about that one 😎 One Dear Saintly soul I think we call her MAZ, opined that one could always start mino and continue to study, as it could be unwise to wait too long. Bingo, made sense to me !!!! I’m exceedingly grateful for that gentle kick in the pants. Did I mention that I am EXCEEDINGLY grateful for that wise opinion shared ??

Ok back to the nitty gritty within weeks of starting mino ( name brand) I could feel brain fog starting to lift a little, a bit more focus creeping in. Within a couple months the knee and feet swelling went away never to return. A few months more my fingers started looking normal, and hand cramping dwindled. Very slow “glacial” progress as John McDonald describes it. Felt like most of the attack stage was ended. After a few months on 200mg. The “invisible braces” of inflammation left my legs and morning stiffness along with it for the most part. A few more months and most of the wrist puffieness resolved. Brain fog and fatigue continued to dissipate. But remember everything is relative and I started out in a very deep hole. Shoulders which started almost as bad as the knees, made continued progress and are 85% resolved today.

So I have come a long, long way on the road back, thank God and the wonderful people who volunteer and share on this board.
The help given here to people is truly worth it’s heavy weight in gold. I could expound on that a little more directly but I think I have talked enough for now.

I will follow up soon with why I think Lyme may be a possibility in my case and why I want to rule it out. But I am determined to get to the root of this and continue to heal. I will hope for some opinions on that when I do, or on anything else I have said as I have gotten a lot already out of this thread.

Thank you ALL ❗

[suera]

You’re the best Maz!!
sue

[Maz]

Sue, you’re a dear one – thanks. 🙂 Patti, you, too, cysta, and I’m putting it out there that you can figure all this out.

I don’t know if this will be of any relevance to anyone, but thought to post this link to a researcher who talks about Lyme and oral spirochetes.

With the ACR recently releasing a press release about imbalances found in the gut microbiota of RA patients and a high prevalence of oral pathogens in this cohort of their studies, this info may be quite important. However, and this is just a layman suspicion, but I strongly suspect that these researchers could be looking at the wrong oral pathogens – p. gingivalis and prevotellaceae – as the prime offenders and that it’s an oral spirochete that is the main trouble-maker. Why? Well, spirochetes aren’t likely to just remain in the gut…they drill through tissues and are highly pleomorphic (shape-shift). They may not be found in the gut in high numbers or even be evident, if they are, because they might not be presenting in recognizable spirochetal forms. In the “classic” sense, too…jarisch-herxheimers were first described in the case of syphilis and, now, other spirochetal forms.

http://lymebook.com/nordquist/tag/oral-spirochetes/

PS Just a further thought…the great thing about LLMDs is that it may not ultimately matter if it’s a tickborne, gut or oral spirochete…these guys are experts in treating spirochetes. 🙂

[Author]

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