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Lyme Disease Support Network

Could this be a false positive or do I definitely have Lyme?


#1

Hi, I’m new to the group. I’m a 43-yr-old female living in Northern CA. I received a Lyme diagnosis just last week (1/27). I was having various issues with inflammation and I grew up in MA so my naturopath decided to test me. I have 2 positive IgM bands from the Western Blot, 23 and 41, and am IgG negative so far. I would like to get clear on whether this is really Lyme. I have pain, but I also have a disc injury; I have anxiety and some depression, but I also have a stressful life, two small children and adrenal fatigue. Etc. My symptoms don’t make it obvious, though that could be because it’s still relatively recent (or maybe I’m just in denial!).

On the other hand… I did have a circular rash last summer. No tick. The rash was lighter than the Lyme-rash pictures I saw online, and it didn’t last long. I do have some new neck pain, and I currently have what I thought was a cold (just this past week). But never had obvious symptoms of an acute infection.

Could this have been a false-positive? On both bands? Are there other exposures/illnesses that would make both of those light up? Also, if it’s only the IgM bands, that means it would have been recent, correct? Wouldn’t last summer (6-8 months) already be showing up as IgG?
The naturopath had me do the Igenex test, which I now know is controversial, and I hope the results (which I’ll get in a few weeks) don’t just make it more confusing. I’m very wary about going down the mortgage-your-house, Lyme-literate-specialist, antibiotics-for-life route (which I know is not this group’s camp). On the other hand, is there any point in seeing an ID doc with few real symptoms and these results? Thanks in advance for any thoughts.


#2

Depends on the molecular weights of those two bands (something IGENEX doesn’t do. A positive lgM is pretty meaningless as a “positive test” is not a smeaningful as a negative test. HOWEVER if you have 5 positive bands on the lgG test you have something to go on. Checking with the ID doc makes sense. The other consult that would make sense with a disc injury and ongoing inflammation is a rheumatologist who can help determine where the inflammation is coming from. Adrenal fatique can cause all manner of difficulty and certainly explain many of your symptoms. BTW the lgG is a pretty standard part of a rheumatlogical work-up these days. There are several forms of arthritis that start out as lyme.

The difficulty with a diagnoses based on lgM is it based in two parts one the actual test which has a high rate of false positives and confirmed by check marks on a list of 50 known “symptoms” Problem is those symptoms are indicitive of literally hundreds of conditions.

You can read a more detailed desxription of what I have said here

The other thing you need to do is think back to that rash how did it start, how much did it grow etc etc. BE SURE, its important. The little buggers that cause lyme are little and easy to miss, but they also need to be there 2 days or so.


#3

Thanks very much. If I’m reading them correctly, the lab results state that both bands are > 8.0. I wish I could remember more about that rash. It was on my side/back and I didn’t know about it til my husband pointed it out. It was several inches across but it could have grown to become that size. It didn’t grow beyond that point and disappeared very soon thereafter. Something about the difference between it and pictures I saw online made me decide to forget about it. Just can’t remember. But even if that was it, I’m still confused about why I wouldn’t be IgG positive by now. Do you think the IGENEX test results will be worthless? Thanks again.


#4

The best way to explain IgenX is that it is an antibody test. A positive test means you have antibodies. thus the “positive” IgM and a Negative LgG. I have positive banding for polio. I certainly don’t HAVE polio but I was exposed. My best friend way back in 1957 and I got sick at the same time. He developed symptoms (iron lung and the whole bit,) I got better, he limps. We both have the same banding. But no one believes he has polio only damage from HAVING polio.

By the same token I got a bacterial infection earlier this year (cDiff) most likley from heavy antibiotics taken preventative prior to joint replacement. I came very close to “singing with the angels” but eventually we found a mix of antibiotics that kicked it. I have some lasting effects severe flares of abdominal pain etc. Treating a no longer existing infection won’t improve those symptoms but some other treatments have made a difference.

Lets say you have a fire that burned down your barn, the fire marshall comes out and determines that the fire was caused by bad wiring. Does it make sense to call an electrician to come out and fix the wiring? Even if he does will your barn be standing the next morning? Of course not - the damage is done. Will continuing to treat my friends polio fix his leg? of course not - the damage is done. Will taking several thousand dollars more of vancomycin make my gut feel better? of course not the damage is done, What you do do is build a new barn, My friend has regained most of the use of his leg through PT over the years (even ran a half marathon), and some amazing meds have reduce the inflammation in my gut.

There is tremendous research going on in regards to lyme (and a ton of other infectious diseases despite what the activists claim. None of it has even come close to showing that the damage of the disease is because it is still active. Leprosy can be cured with 6-12 months of multi-drug therapy. but the scarring remains.

PTLDS is where we are at. About 10% of folks who are lyme infected don’t fully recover in 2 mos or so. Of that 10% roughly 80% recover within 18 mos to near normal condition (of course if you are a “lyme doctor” treating that group, you claim success despite the fact numerous studies have shown the same results with or without treatment)

So what are we left with? a small group who unfortunately have damage to their immune systems. Its permanent (at this point) but treatable for most. The fifty common lyme symptoms are also the same group of symptoms that auto immune and a host of other disorders have in common. Treating whats wrong makes a ton more sense than rewiring the burned down barn. Certainly more so than getting sicker because the “treatment is working”

TJ


#5

Thanks for your response. Trying to make sure I understand. Do you mean you still have IgM bands for poliovirus? I have a friend who has been treating Lyme for several years. She continues to be IgM positive only–it’s never gone to IgG. Is she still acute, or would you posit the original infection resolved already? (She believes she’s chronic and takes high doses of antibiotics and even did chemo recently.) I recently read that IgM will keep testing positive because new antibodies can be made every time the organisms reproduce. Does that make any sense?


#6

hi k. the only decent test i know of is called lyme immuno assay, as western blot is inaccurate for many many reasone and gives vast false negatives and posatives. the only hterapy i know that is saving my life is LDI or low dose immuno therapy as other countries use. this combined with other things is healing my body and life… you are now perhaps on a long trip you never wanted, but keep the faith and you will eventually gt better, much better please excuse my typing.


#7

Thanks Raybo. I just wish I knew what to do. I don’t want to overtreat and I don’t want to undertreat. I’m finding the animosity between the two sides really tiresome. It leaves those needing care completely confused. Glad you’re feeling better. All best to you.


#8

I assume you are reffering to the C6 EIA. You are partially correct. There was just some recent studies published that are very encouraging. The C6 EIA alone had sensitivity similar to that of standard 2-tiered testing (79.8% vs 81.6% for standard 2-tiered testing; P = .71) with slightly lower specificity (94.2% vs 98.8% 2; P < .002). The intersting thing is that addition of a supplemental immunoblot improved the specificity of the C6 EIA to 98.6%. The conclusion is that C6 EIA is not a stand alone test but when coupled with the immunoblot 2 tier testing is pretty darn good.

LDI does hold some hope but the practitioner is critical, there are a lot of “jump on the wagon types” out there who are pretty clueless simply copying Ty Vincent MD’s work . Interestingly enough there is a massive effort on the NIH in this area. Willy Burgdorf was until his recent death pretty active in this area (even in retirement. His group has continued the work. The idea of “vaccinations” to cure/treat a number of conditions has been around for years. Broad based therapies are hard to come by but there is a lot of progress being made individualizing treatments. Especially in cancer treatment. I expect great things from the whole field.

With LDI for lyme success has come from regulating the cytokines in certain individuals. The problem is cytokines are as individual as the number of people that have them. The BIGGER issue (in my mind) is the reluctance of the supposed LLD’s to abandon antibiotic therapy (profit??) and their mantra of more is better. The problem with cytokine is that while they are a good thing too many (resulting from to much LDI therapy) is a bad thing which has near the same results as too many antibiotics:

Too many cytokines or antbiotics:

  • suppress the immune system,
  • cause pain,
  • decrease hormone production from organs like the thyroid and the adrenal glands,
  • disturb sleep,
  • decrease brain function,
  • increase fatigue and tiredness,
  • waste muscles,
  • cause depression, and
  • decrease the function of various organs throughout the body resulting in many other symptoms and medical problems.

Needless to say for this to work requires a LOT of skill. There isn’t a lot of skill out there.


#9

Hey, I figure you meant LDI instead of LDD,? I get it. Yes finding a proficient Doc is hugely important, I am blessed to have the one I do. He knew what I had well over a year before the better test was used, but legally had to wait until that result as in. Note: One of the primary symptoms he seemed to qualify the Lyme diagnoses was chronic low testosterone levels (well, well below the line), not responsive to any form of supplementation. You may wish to pass this on to other men? Thankfully, this problem has since resolved itself naturally. Regarding cost of LDI, I believe it to be pretty affordable, I believe I pay around 50-60 dollars for each injection every seven weeks, just stretched to 9 weeks because of positive results.

 Yes, I believe it was also called the C6 EIA as well, I really just remember Lyme Immuno Assay as I was not in the best state of mental health with the Lyme, thank God that is passed.  But if you would like I can dig through my files and let you know for sure.

 Last thing, recently, my physician has suggested and I have since been on CDB oil, thus far, it has been extremely useful for pain, mental restoration and improvement of other symptoms as well.  It may be worth other people checking out.

Thanks for your time,

Ray


#10

My typos are legendary, worse since my stroke a month ago… LOL!! Yeah I would be interested in what you have. I wish Willy was still here, I worked fished and golfed with the guy for a long time. I think he would very pleased at the progress… The "vaccination thing was far more successful with cattle. My sister work for him too. She ended up with Rocky Mountain spotted Fever. The T issue is interesting. Maybe you should start a thread???

TJ


#11

Hi there, I’m new to the group and saw your post. I’m in New York, but have more or less the same stats as you. What’s going on with you now? I did one 30 day course of Doxy and nothing really changed. My doctor is telling me to wait another six months and get tested again, while my friends with Lyme are telling me to keep going with the antibiotics. Curious about your path because it is all so confusing!


#12

Hi Anne,
I’m still totally confused myself. I did the Igenex test and my results were mostly equivocal. My doctor says I’ve been exposed but I’m not “super Lyme-y.” How can you have a little Lyme–is that like being a little pregnant? I’m pretty turned off by the contradictory information that abounds and divisiveness in the medical community. I found a good naturopath who, while being “Lyme literate”, is also fairly conservative and doesn’t want to overdo antibiotics. So we’ve been holding off on starting a course until she sees whether I get a reaction from Byron White formulas, which I just started… It’s all pretty slow going but, until I really know what I’m dealing with, I don’t want to destroy my gut. That probably doesn’t help, I’m sorry! What are your symptoms?
Best,
Katy


#13

Aaaaaand I just had to go look up Byron White formulas. More information! It looks like good stuff, though.

I’m 48 and my symptoms are very much those of a fairly healthy perimenopausal woman. A little joint pain (though I had bad knees already from running), a little insomnia, some night sweating (mostly when I had my period), a little brain fog, some heart palpitations, but nothing major. I got tested because I have some friends who’ve been really sidelined by it. When I tested IGM, totally negative IGG, all the doctors told me that I had just been infected but I honestly don’t believe it. I live in the city and got bit while upstate two years ago now. Pulled the tick off, no rash, no illness, didn’t think anything of it. About 6 months later I had what I thought was a nasty flu with severe joint pain. I felt awful for about 24 hours. I got better and forgot about it. Cut to a year later when I decided to get a checkup (hardly ever go to doctor) and on a whim, I asked them to test me for Lyme. That’s when I get the IGM bands 23 and 41 positive. A full year and a half after being bitten. I know it’s possible to get bitten and not notice, but my gut tells me this is not a recent infection, even though that is what IGM supposedly means. I think I’ve had it for a long time and it’s never converted because I have a good immune system. Sounds kind of like what may be happening with you. Maybe you had it as a child and it never converts because you’re pretty healthy. I saw an infectious disease doctor at NYU and she is the one who told me to get tested again in six months and not to do any more antibiotics.

Anyway, I’m trying not to stress about it but I hate the thought of those little buggers living inside me waiting to detonate! It really helps to chat here. Thank you!


#14

Also: am I understanding that right about IGM? That it’s supposed to mean that it’s recent? Why else do the doctors say, “Oh, it looks like you’ve just recently been bitten.” You know? I mean, I could go to a new doctor today and my blood would look to them like I’d just recently been bitten.


#15

Apparently it can only show positive on IGM but still be old, because of the way Lyme hides and tricks the immune system. I’m not sure exactly how exactly… Wait, maybe this helps? http://www.anapsid.org/lyme/wb.html
I dunno… I’d really like to think it’s a false positive, but those particular bands we have are supposed to be very specific to Lyme. I may have gotten it as a child, or else it was last summer (I did have a rash)… If I have a herxheimer reaction to the Byron White drops then my doc thinks that’ll prove it. There’s also a new test called the Nanotrap that’s supposed to be good which I’m thinking of trying. Please let me know if you figure anything out, and I’ll do the same!