Have Hashimotos, now diagnosed with Lyme, really?!

[chelsis]

I have Hashimotos Hypothyroidism, I have been diagnosed for over 7 yrs. I started going to a new doctor because I wasn't getting relief from symptoms and my other doctors didn't care. When I started going to my new doctor she ran a LOT of labs, and finally she said that I needed to have a Western Blot done, because she suspects lyme is the underlying case of my Hashi's.

Now, I haven't not ever been bit by a tick that I know of... But live in PA. I went through IGeneX for the test, here are my IGG bands that are positive: 39, 41, 45, 58. I had another Western Blot run through my 'normal' HMO, that came back with only band 41 positive. I have started the LDI treatment. Doctor says that can work, and antibiotic treatment is really bad (3 antibiotics over months). I thought I would try this... Not sure what I am suppose to 'feel' since I didn't know I had lyme in the first place...

I guess my questions are:
1. Is IGeneX a reputable lab, are their results 'true' positives?
2. Anyone have Hashis and lyme and not realize that they had lyme all along?
3. Anyone have the same 4 bands and it is a 'true' positive?
4. Anyone JUST doing the LDI treatment?

Thanks!

[JackieCalifornia]

I hear you.  All the different information about Lyme and what to do and what not to do just makes it harder to *know* what to do.  That's because Lyme is a tricky and fairly new infection, and the docs are working hard to figure it out.  

You say above:  "My Doc is not an MD, but a Nurse Practitioner, who works with a doc. She stated that most of her patients are doing LDI, instead of antibiotics for lyme."  I have read some about LDI but not enough to say that I would choose that treatment over antibiotics.  

I had Lyme and babesiosis (from the same tick bite), and each of those infections needed different antibiotics -- first the babesia was treated, then when it was gone, the Lyme was treated.  I never felt worse on the medication than I did before starting it, and gradually over several months, I began to feel a little better at a time.  There was no sudden snapback into being the old me ... it was more gradual and took some months ... it's just the way Lyme and Lyme treatment work.  There's no easy way out, but there IS a way out through treatment, and holding on to that knowledge will get you through.  And it truly was worth the effort!  I am now my old pre-Lyme self, and have been just fine for about 5 years now since treatment ended.  

About your friend who has 'chronic Lyme', maybe you will inspire her to try a different doc.  I have not read anything over the years that says Lyme cannot be treated ... I suspect that when the symptoms linger after Lyme treatment is done, the doc overlooked something, and a consultation with another Lyme doc may be in order -- it's what I would do.  Bottom line:  diagnosing and treating Lyme and any co-infections takes longer than most infections we are used to encountering, but it is worth it to be healthy again.

You say, "I guess I wanted the 'easy' way out if it would help get rid of the lyme."  Of course!  It is wise to take the fastest path ... IF it works, but Lyme doesn't go by the usual timing approach:  it just takes longer because of the way the Lyme bacteria are made, with their slow 'windows of opportunity' for the antibiotics to get in there and kill the Lyme, and as a bonus, your best friend who has Lyme may be inspired by your approach.

You say, "I guess I just feel unsure of my test, though it was a true lyme test, maybe it is because I don't want to face what I am going to need to go through?!"  I never felt worse on antibiotics to treat Lyme and babesiosis than I felt before starting treatment -- it was just a gradual getting better over time.  After treatment, I was a bit worn out, like I would if I had had ... say, a bad case of the flu:  not my old energetic self right away, but it gradually came back over a few months, and I'm fine now, as is someone else in my family who also had Lyme and babesiosis.  

You say, "I also want to make sure I have lyme before treating with antibiotics."  Good!  That's the right thing to do.  Some infections are not always easy to get accurate answers about whether you have a certain thing, but the IGeneX PCR test is, to my reading and in my experience, quite helpful.  

In comparison, the Lyme test your current or previous doc ran and got a negative result may have been based on the older tests which *do not* look for Lyme DNA (as the IGeneX PCR test does), but instead look for your *immune system's reaction* to the presence of Lyme.  That would work, except that the Lyme bacteria have the ability to suppress your immune system ... and so the test can easily come back as a 'false negative':  you have Lyme, but the test inaccurately says you do not.

That could explain what happened when you "had my MD run their lyme test, came back negative... It was not Igenex or LabCorp, just a 'normal' lab."
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I am a bit unclear about how your test results were reported, but keep in mind that the numbers need to be read as a whole group, not just looking at each indicator separately:  it's the overall trend that counts, to my understanding.  If I read the data correctly, you didn't get ANY negative results on IgM:  you got one solid positive number (41) and all the other numbers were maybe yes/maybe no.  To my understanding, that is NOT a NEGATIVE.  And what is not a negative is ... a POSITIVE.  

(Think of it like grade school:  if you get all C's on your report card, it means you passed, even if you didn't get any A's or B's.  Same thing with Lyme:  one positive band plus other 'maybe' [indeterminate] bands are NOT NEGATIVE.)

Then add in that one result is 40, meaning equivocal, which means 'maybe.'  When you add up all the 'not negatives' and 'equivocals', you look to my untrained eye to have 'grades' of B and C (but no A's) -- and remember:  having B's and C's is definitely not the same as getting D's and F's.  

Bottom line:  you don't have to score an A or 100% on a test to pass -- and you can definitely have Lyme.  

I'm not medically trained, as I keep saying (ha!) ... but in your situation I would find a wise Lyme doc to (1) review all your tests to date and (2) take a history of your symptoms to date, and see what the doc thinks.  I may be all wrong about this, but if it were I, I would go see a Lyme doc *just in case.*

Let us know what you do, and what you find out, okay?  Best wishes!

[chelsis]

Thank you Jackie for all your info! That did help me!! I had the 188 IgM & 189 IgG Western Blot testing... On the IgM only band 41 came back positive, others were indeterminate. On the IgG 1 was indeterminate + 4 positive bands. The burgdorferi was 40, which is 'equivocal', anything above 40 is positive, anything below negative.

My Doc is not an MD, but a Nurse Practitioner, who works with a doc. She stated that most of her patients are doing LDI, instead of antibiotics for lyme. I guess I wanted the 'easy' way out if it would help get rid of the lyme. I honestly, don't know what to do... My best friend has chronic lyme, I watched her go through 'hell' with what lyme put her though, and I have seen others with terrible lyme. I do NOT want that for myself.

I guess I just feel unsure of my test, though it was a true lyme test, maybe it is because I don't want to face what I am going to need to go through?! I also want to make sure I have lyme before treating with antibiotics. I had my MD run their lyme test, came back negative... It was not Igenex or LabCorp, just a 'normal' lab.

Thanks for your help!

[mojogal]

I have hashis as I believe it is lyme induced.  I may try LDI, I am still not sure but I am CDC positive on my igenex tests.

[JackieCalifornia]

Welcome to MedHelp Lyme --

Very glad for you that you are finding out what's going on.

Many of us never see a tick or have the famous 'bullseye' circular rash -- the 'bullseye' is useful when it's present, but if it's not seen, that does not rule out Lyme.  I had Lyme, but never had the rash or saw a tick, and the same happens to others.  

You're right, Pennsylvania is Lyme territory ... but with the continuing spread of Lyme, it's now pretty much everywhere.  Docs are used to thinking Lyme is only in Lyme, Connecticut and New England, but the ticks can't read maps, so they go wherever they please, as they have done in recent years in particular.  Bottom line:  Lyme is pretty much everywhere.  
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Like you, I never saw a tick on me, but then again the Lyme ticks are the size of a period at the end of a sentence, so they are easy to overlook.  Also, after feeding (that is, after sucking your blood and leaving behind Lyme bacteria), the Lyme ticks have full stomachs and drop off the human just bitten, so there is no hard evidence of a tick having been on you.  

And in addition, many of us never see the famous circular red rash that is a hallmark of Lyme -- if the rash is on your scalp, you won't see it because your hair is the way, or it's on some part of your body you don't regularly see (upper back thigh, anyone?), or because your immune system just didn't saddle up and create the rash reaction to the bite.  

Bottom line:  if you see the famous Lyme rash, it's important, but if you don't see the rash, it does NOT mean you do not have Lyme.  Any doc says 'You don't have a rash, so you can't have Lyme' is not a doc I would see again.
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About the IGeneX tests:  there are several different ones, including

6050 - Complete Lyme Panel**:
             Includes Test 230 Lyme IFA**
188 IgM Western Blot
189 IgG Western Blot
453 Lyme PCR, serum
456 Lyme PCR, whole blood

Do you know which tests you had?  This matters because these tests do not all function the same way, to my understanding (and I am NOT medically trained).

The Western blot tests rely on your immune system to be functioning properly, but Lyme disease can *suppress your immune system* so that the test comes back negative ('you do not have Lyme') when really you DO have Lyme.  This is an INDIRECT test, relying on your immune function, and not looking directly for evidence of Lyme.

The Lyme PCR tests are, to my understanding, more accurate, because the ups and downs of your immune system are *not* being relied on in this test structure.  Instead, the PCR ['polymerase chain reaction'] test looks in your blood to find DNA of the Lyme baceteria.  This is a DIRECT test, which does not get all tangled up with the immune system as in the Western blot test.  

==>>  Bottom line:  I would rely on the results of a PCR test if positive.  If I got a negative PCR test but a positive Western blot test, I would want to know why in detail.  

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"I went through IGeneX for the test, here are my IGG bands that are positive: 39, 41, 45, 58."

IgG is short for Immunoglobulin G, one of the antibodies the human immune system uses to attack and kill bacteria.  Here is what I have read each of your IgG bands mean.  "Bb" is short for Borrelia burgdorferi, the scientific name for bacteria which cause Lyme disease:

  band 39 -- a major protein of Bb flagellin [tiny whiplike tail], which is specific to Lyme, meaning ONLY Lyme disease bacteria have this band

  band 41 -- could be Lyme, or could be something else, and since you tested positive on two different tests for this band, it would make me want to know more about the whole situation

  band 45 -- could be Lyme, or could be other Borrelia bacteria
  
  band 58 -- could be a 'heat-shock' protein of Borrelia

I am not medically trained, but having even one significant Lyme band (#39) would send me straight to a Lyme specialist.

And given that other bands you have may or may not be Lyme, the fact that you DO have a strong Lyme band would keep me from believing I do not have Lyme.  I would do more consultation and testing with a Lyme specialist before saying 'it's nothing.'  
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It sounds like your MD is also thinking you have Lyme, since he is treating you for it.  That's good.

I am NOT medically trained, but I am deeply concerned about this suddenly new 'low dose immunotherapy' (LDI) for Lyme disease.  Elsewhere in this website is more commentary and concern about LDI not curing anything, but instead simply suppressing your immune system so you don't feel lousy but have Lyme anyway.

I am waiting for serious medical literature on this topic, and so far have found none.  Suppressing the immune system does not kill an infection -- instead, it allows the infection to run wild.  

Antibiotic treatment is NOT 'really bad' -- in fact, the reason Lyme is treated for several months of antibiotics is that Lyme bacteria

     -- can and do hide in areas of the body (such as biofilms, slimy areas where the immune system doesn't recognize the bacteria) and also

     -- reproduce at a very slow rate, which outlasts the shorter-lived immune system mechanics.  

This kind of mutation to different aspects of various bacteria occurs randomly in nature, and when the human immune system is not set up to react to these newcomer infections, the infections tend to win hands down against the immune system ... until a mutation in the human immune system (or a new drug or medicine) is discovered which kills off the new varieties of bacteria.  For example, AIDS didn't exist until a couple of decades ago, but medical science has been busy finding ways to treat and possibly prevent the spread of AIDS.  

You say your MD says that "antibiotic treatment is really bad (3 antibiotics over months)."  A Lyme specialist would say the opposite:  Lyme has spread rapidly through the population because the Lyme bacteria need *longer* antibiotic treatment than most common bacteria, while most docs are giving the same (inadequate) treatments for such hardy and long-lived infections.  Different treatment and longer treatment against Lyme can fix this problem, but MDs have to be aware of the problem in order to stay ahead of the mutating bacteria and knock them down.  

You ask:

"1. Is IGeneX a reputable lab, are their results 'true' positives?"

My Lyme doc used both LabCorp and IGeneX, but for different purposes (I had more than one infection from the ticks).  I did quite a bit of reading about the various labs and could not find any arguments against IGeneX that made sense.  

My tests from both LabCorp and IGeneX were useful, and IGeneX was particularly useful against Lyme, because the IGeneX test is made differently and more precisely than the LabCorp test.  The IGeneX website has information explaining its approach.  

"2. Anyone have Hashis and lyme and not realize that they had lyme all along?"  Doesn't apply to me; I had Lyme and babesiosis, not Hashimoto's.

"3. Anyone have the same 4 bands and it is a 'true' positive?"  Does not apply to me.

"4. Anyone JUST doing the LDI treatment?"  Not me, and for the reasons stated above, I would NOT do LDI:  suppressing an infection is NOT the way to kill it.

Best wishes to you, and good for you to continue to ask questions and figure things out!  Keep us posted -- it's how we all learn to beat these critters.