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Lyme Titer blood test - please explain
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Lyme Titer blood test - please explain

Is it similar to IGG or IGM lyme antibody testing?

I've had two Titer tests in the past and came back negative. I would like to know the specifics of what this test looks for. I have since learned that many consider lyme titer  a useless test as far as accuracy goes - is this true?

Would like to get proper testing - I guess that would be from Igenics.  I checked out their site and they have a lot of tests - confusing. You would think they would make suggestions per State of residency of what to test. I am thinking of having a non lyme literate MD order the some type Igenics test to save a lot of time and money. I really dont feel like waiting 5 months for a Dr that knows this. If its positive then I'll wait for the proper Dr. Is that a route some follow? Seems like a plan to me.

Unfortunately Lyme symptoms and hypothyroid symptoms are very, very similar. Hoshimoto hypothyroid (I have this) is caused by specific autoimmune thyroid antibodies attacking and destructing the thyroid (the body attacking itself). Some say Lyme can cause hypothyroid. Maybe, ........but that would be regular hypothyroid (without high levels specific thyroid antibodies). My thyroid has been receiving optimal treatment for a few years (I learned a lot), yet some symptoms that are similar to lyme remain. Thus, my quest for proper Lyme testing to rule it out or find it if I have it. PS I'm an outdoors-man in the tick infested North. Seen my share of them crawly creepy little things.

thanks for the info and anything else
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Kinda neat to see a familiar name on this forum;)  there is someone on this forum whose thyroid antibodies either greatly reduced or went away once they started lyme treatment, so it's hopeful!  (Their comments about it can be found under one of my posts.). I am waiting for my first LLMD appt on May 1st and though I'm not excited about the hefty cost, I am excited to finally get some answers and I was assured that they can also continue working with me on treating my Hashimoto's, just in case it is entirely a separate entity.  Which means I won't have to continue paying my other holistic md to get the Naturethroid (which btw has not offered me any relief during my first week on it).  Hopkins just ran a Lyme titer on me and I'm not sure what the difference is, nor am I hopeful that it will indicate anything.  I do know that the IgG is for recent infection and the IgM is for chronic or at least that's what Hopkins just told me.  Please keep in touch with any info or appts you have, as I'm super curious about Lyme and Hashimoto's!  I hope this offers answers and relief for us both.  As you said, hypothyroidism is bad, but at least there is a cure.  I don't think anyone without antibodies (thyroid, Lyme, or otherwise) understands how ill those antibodies make us feel no matter how "normal" the rest of our labs look.  I need the antibodies to cease to exist in order to feel better:(
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Welcome to MedHelp Lyme -- it's late so this will be a short reply, and others will be along in the morning also to respond to your questions and concerns.

Others here have commented in recent days about thyroid issues as well.  You might put 'thyroid' into the 'search this community' box in the right hand column and see what pops up, for now.

More tomorrow --
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Welcome to our group.

For me, I was misdiagnosed with Hoshimotos, MS, lupus and others but it was the Lyme that caused this even though my tests were positive and high. Most people I know are hypothyroid from Lyme. It seems to get cured as they get cured.

If you can get a non LLMD to run the tests, that is fine but if any come back positive or borderline you will need to see an LLMD to get proper treatment.

My LLMD did the co-infection test and a regular cd-57 for Lyme. I have had this for over 20 years so it was obvious I had Lyme at that time. I was positive for Bartonella. It wasn't until later that I was positive for Babesia.

An LLMD can treat you based on your symptoms and not test results alone.

Lyme is a tricky disease and can present itself differently in everyone. You mentioned igeneX should list tests by state but in reality, you can get Lyme in any state, its the co-infections, which to me are worse than the Lyme itself that you should test for.

A well known LLMD (Schaller) writes in one of his latest books he believes Lyme is the co-infection of Bartonella or Babesia. I am not sure about that but Bartonella seems to be the worse for me, effecting me neurologically in a bad way.

Being exposed to ticks a lot means what you are suffering could really be from Lyme. Since I am currently very sick myself, this is all I can manage to write for now. Others will give their opinions.

Keep us posted.
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Thanks for the early replies.

My question is not about thyroid, I am very well informed in that area, and I have done all anyone can in that area (I'm from that group at MH).  It can be confusing as most of the possible symptoms are in both, so if you have both, its could get confusing as to what treatment fixed which symptoms.

I'm trying to rule out lyme as the cause of some symptoms I have or look elsewhere. But since some people with optimal Hashimoto treatment never fell 100% great again, this makes for more confusion. I have had my share of ticks from the woods my whole life.

Many people from the lyme community do not realize the two different hypothyroid . They are not the same. Hashimoto specific antbodies TPO and TGab never go away, there is no cure. They can lower, but never go away.You can get to feel better, but  you need hormone replacement and the TGab or TPO will remain. Regular hypothyroid can be cured. You can have regular hypothyroid and not have Hashimoto.

So this makes treating or Dxing lyme based on symptoms more difficult in my case. As I still have some thyroid symptoms (many people stll do) and they can be the same as lyme, all but the rash.

The only states I've been in the woods are Minn, Wisc, Mich, and Iowa - I would imagine they all have similar tick borne diseases?

"If you can get a non LLMD to run the tests, that is fine but if any come back positive or borderline you will need to see an LLMD to get proper treatment. "- thats what I'm thinking. But I might need help in looking at the tests maybe.

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Many of us never had a rash. Lyme is known as the great pretender. I know the difference between Hoshimotos and low thyroid. My LLMD explained it all to me. What I am trying to say, believe it or not, is that I had all the titters for Lupus, Hoshimotos, hemochromatosis (which is a genetic test) MS  and I can go on.

I even told my mainstream doctor that I should be written up in a medical journal for having all these illnesses at the same time. . I was relieved to have Lyme rather than these other illnesses where there is no cure. For example you may go to a world famous hospital like John Hopkins and be told you have Hoshimotos when in reality you have Lyme. Same titters.

If I were you, (since, after having Lyme in my body for over 20 years and knowing the damage is major), I would see an LLMD to rule out Lyme and perhaps in your case you do have Hoshimotos. There are many who are told they have it when they don't. Me included. You are right, there are many similarities.

We will help you with our non medically trained opinions of the IgeneX tests. Like I mentioned, the co- infection testing is very important. I just wouldn't want you in my shoes, so sure you had all these autoimmune illnesses when it was all Lyme all the time and wasting precious time that could be used to heal yourself.

Best of luck!
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So is a lyme titter test that I had just some generic name for any lyme test the Dr ordered in the past? Wondering what it was? I googled lyme titter and didnt get much help.

thanks
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There is no Lyme titter test. I was talking about the tests for the autoimmune illnesses.

You should do Elisa or Western blot and Lyme co-infection tests through IgeneX. You can also get a regular blood test called CD-57 which tells you if you have chronic lyme. The higher the number the better. Since mine is still low I know I still have the illness.
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Morning!  Now to your questions (and others will weigh in here) -- none of us here is medically trained that I know of, so take with a grain of salt -- but we're happy to share.  

"Is [the Lyme titer test] similar to IGG or IGM lyme antibody testing?"

I believe it's the same thing.  It looks for antibodies your immune system makes against the Lyme bacteria.

"I've had two Titer tests in the past and came back negative."

That's not unusual, for several reasons, but so-called mainstream docs believe the tests to be the last word on whether you have Lyme or not.  Unfortunately, Lyme didn't sign up for that point of view.  One reason: Lyme is immunosuppressive, and it can cause your immune system not to produce the usual number of antibodies.  Thus the usual tests (Western blot and ELISA) often don't show a positive result even if you are truly infected with Lyme.  

A Lyme specialist (LLMD -- which is patient slang for 'Lyme-literate MD' and not an official title or degree) -- will often use a PCR test such as from IgeneX labs, which look for direct evidence of the Lyme DNA in your body, not for your immune system's reaction to Lyme as the W.blot/ELISA tests do.  (Another reason the W.blot/ELISA tests are not as definitive is that Lyme has a very slow reproductive cycle, and it is when dividing (and the cell wall is disrupted) that antibiotics are most effective, so the usual 2 weeks of abx doesn't tend to cure Lyme except in the very early stages after infection; this is true also of tuberculosis, which has a usual treatment time of 18 months.  Oddly, nonLLMDs do not address this issue in any literature I have seen.

"Would like to get proper testing - I guess that would be from Igenics.  I checked out their site and they have a lot of tests - confusing."

That's because Lyme is confusing and not your average bug.  And their site is meant for medical professionals, not patients, but it's chockful of information.

"You would think they [IgeneX] would make suggestions per State of residency of what to test."

Ticks don't read maps, and they don't play by the rules.  The CDC (Centers for Disease Control) and the IDSA (Infectious Disease Society of America, the main voluntary group for infectious disease docs, which is in effect a group of Lyme deniers) have a pretty little map with a cluster of one kind of Lyme in the Northeast US and another kind on the West Coast in a small area.  Well, tell that to somebody in Texas, where there is plenty of Lyme but the official position there is that There Is No Lyme In Texas, and docs who treat it ILADS-style have been run out of the state.  Not a good place to get Lyme.  

Bottom line:  Lyme is everywhere and it's spreading.

"I am thinking of having a non lyme literate MD order the some type Igenics test to save a lot of time and money."

If you can even find a nonLLMD who will order the test.  Then you have the problem that the doc won't be able to read the test and act on it properly.  Also:  an LLMD would, after careful questioning about your symptoms, know what co-infections to test for as well.  The co-infections are often/usually treated first, because Lyme is a longer haul to treat while many (not all) of the co-infections are quicker cures.  It depends on the specific coinfections, and sometimes they are not even found until treatment is underway, because Lyme suppresses the immune system and many of the tests rely on immune system response:  'no response' is not necessarily 'no infection'.  What's the saying:  "Absence of evidence is not evidence of absence."  Too true in Lyme and its coinfections.

The tests are not cheap, and if you try to pick and choose, you may just be wasting your money and time by testing for the wrong things.  My motto:  Lyme is not a DIY project.  I'd find an LLMD and get a proper work up and testing.  You can ask to be put on a cancellation list at the LLMD's office.

You can email to

        contact [at] ILADS [dot] org

and tell them where you are located and how far you can travel and they will send you names of LLMDs within reach.  If the first batch of names they send are all too busy or you don't like what you read about them, ask for more names.  Lyme understanding is still in flux, so there are some questionable docs out there I wouldn't let treat my dog.  Keep your antennae up and follow your instincts.

About your thyroid situation:  I'd wait till you know what the Lyme situation is before deciding you have Hashimoto's.  A nonLLMD will not have Lyme in the differential diagnosis, because Lyme is just not on the radar for nonLLMDs.  My thyroid function was way down when I had Lyme, and I was on thyroid supplements during treatment ... then all of a sudden my thyroid came roaring back and is fine now.  Lyme messes with the endocrine system.  So don't jump to a conclusion yet.  See what the Lyme doc says.

Go for it!
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I was asking about what I had tested (my post heading).  Two Drs (2 yrs and 10 yrs ago) called it lyme titer and drew my blood in the lab. It said Lyme titer on the test sheet/paper. Thats what they called it, without any additional terminology. It seems to be a common term with general MD's up here in Mn but not on internet forums.

I know what I need now (Igenics), but still wondering what the Lyme "titer" tests were in my past. Oh well.........

The  specific Hashimoto antibodiy test are not refered to as "titers". The three thyroid antibody tests are only TGab, TPO and TSI (graves hyper only).

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Error --  in the 6th paragraph of my post just above, I switched thoughts in the middle of the stream, and it's a bit garbled.  No time to unravel it now, just take that para. with a grain of salt.
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From the NIH (Natl Institutes of Health) website:

"Antibody titer is a laboratory test that measures the level of antibodies in a blood sample.

"The antibody level in the blood tells your doctor whether or not you have been exposed to an antigen or something that the body thinks is foreign. The body uses antibodies to attack and remove foreign substances."

Titration itself is a just method of testing:  "a measured amount of a solution of unknown concentration is added to a known volume of a second solution until the reaction between them..."
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oops, that got truncated.

Definition of titration should be:

"a measured amount of a solution of unknown concentration is added to a known volume of a second solution until the reaction between them is just complete; the concentration of the unknown solution (the titer) can then be calculated"

It's just a method/process.
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Here is that garbled paragraph, now edited to split it into two different thoughts:

This part of what's above is about PCR testing vs W.blot/ELISA tests, which nonLLMDs tend to rely on as the last word, but it's not very reliable:

"A Lyme specialist (LLMD -- which is patient slang for 'Lyme-literate MD' and not an official title or degree) -- will often use a PCR test such as from IgeneX labs, which look for direct evidence of the Lyme DNA in your body, not for your immune system's reaction to Lyme as the W.blot/ELISA tests do.  

This part is one reason why the standard dose of antibiotics a nonLLMD usually prescribes is often ineffective:

"Lyme has a very slow reproductive cycle, and it is when dividing (and the cell wall is disrupted) that antibiotics are most effective, so the usual 2 weeks of abx doesn't tend to cure Lyme except in the very early stages after infection; this is true also of tuberculosis, which has a usual treatment time of 18 months.  Oddly, nonLLMDs do not address this issue in any literature I have seen."

Sorry for the confusion.  One of those busy days.
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OK so titer is a non technical name for any antibodies. Its kind of a usless word then, yet appeared on a technical test report.....ironic.

I will keep looking for a LLMD that isnt a million $ nor booked till mid summer.

I actually do have Hashimoto, for years. I almost went into a myomexima coma a few years ago with thyroid hormones off (completely under ) the ranges. Very high thyroid specific antibodies TGab and TPO, and a thyroid gland that is phyically damaged as seen from ultra sound, complete with a nodule.

Thats not to say something else is contributing to my thyroid symptoms. Since my thyroid is actually damaged (looks like swiss cheese via ultrasound), if something else was contributing to my low thyroid and was corected, my thyroid is to damage to produce the correct levels of hormone needed to live a quality life without daily replacement hormone. It might possibly "sputter along" better from improving other contributing issues, but cant totally heal and regrow to normal density.

The symptoms are much better now (not gone though) on a dessicated thyroid hormone vs snythetic (very common, last ditch effort for many with Hashimoto.).

That said, I think my remaining symptoms thought to be from Hashimoto might still be something else that has been lingering in me for 20 years.

That brings on onother question, if one is infected with Lyme from 20 years ago, how does that effect testing, diagnosis and treatment?

thank you.
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Titer isn't a nontechnical name for the antibodies, as I understand it -- it is instead a reference to the method used in the test:  titration.  I think it is a way of gauging the relative number/strength/presence of the thing being measured ("concentration of the unknown solution (the titer) can then be calculated").

About your Hashimoto's -- I often think medical types are guilty of not taking into account that one can have different, concurrent ailments.  You could indeed have Hashimoto's AND then get Lyme.  It muddles the diagnostic picture, but a wise doc will think about it at least.  Too many docs get too narrow a focus.  So you could have both Lyme AND Hashimoto's.

A 20-year-old Lyme infection can still be treated.  I don't know that it matters how long, and many of us have no idea when we got infected.  I think I was first infected on a trip to Europe, maybe tromping around the grass at Stonehenge.  No tick seen, no rash, just feeling like I had the flu and a hangover at the same time.  It was fairly mild, but enough to leave me a bit addled and tired all the time.  Then a year or so later, I got much worse after a trip to the East Coast, again tromping through grassy areas.  I didn't put all this together till long afterward, and truly one never knows -- even if you see one tick, it may not be the only one that got you nor the first to do so.  Nature is not that tidy.

A long-time infection can have a problematic effect on the test results (primarily the W.blot/ELISA combo) and therefore cause a missed diagnosis.  The immune system is set up to kill bacteria with a very short life cycle, and that matters because it is when dividing (reproducing) that the bacteria are most susceptible to meds through their breached cell wall.

(I have read in several places that Lyme bacteria have a 7 day life cycle, compared to strep bacteria, which has an 8 HOUR life cycle.  Ten days of treatment for strep = about 30 life cycles, while to achieve 30 life cycles of treatment for Lyme would be ~30 WEEKS.  That is why LLMDs treat for longer than nonLLMDs and also get a lot of flack for 'overtreating' Lyme patients.)

But back to your question about what effect a long-time infection has:

-- on testing:  because the immune system evolved to deal with bugs with a short life cycle (as just mentioned), the immune system assumes after a relatively short period of time that it has killed all the bacteria from any infection and stops its mission to kill.  Any test (like W. blot and ELISA) that relies on detecting antibodies to Lyme will come up negative because the body has stopped making antibodies, although the bacteria are still present.  Lyme also has the ability to hide in slimy shields called biofilms and/or in a cystic form where the immune system can't 'see' them; what you can't see, you can't kill.  That's why LLMDs use PCR testing, which doesn't rely on the immune system reaction.

After 20 years of infection, the Wblot and ELISA are likely to come up negative.

-- on diagnosis:  negative test results means negative diagnosis.

-- on treatment:  no diagnosis, no treatment.

Other than that, it's my understanding that Lyme is still treatable after many years, tho of course there may be damage done that can't be repaired, but maybe not.  Since the Lyme bacteria like to sequester themselves in areas of low blood flow (in order to evade detection by the immune system), they may just be in suspended animation for a loooong time and not do much harm.

Alternatively, it's possible that Lyme in the brain can have damaging effects, just as syphilis can (being a cousin of Lyme), but imo what 'might' be so is no reason to avoid pursuing a diagnosis and treatment.  

Don't borrow worry.  Just find an LLMD and get a work up.  That's what I'd do.
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and PS  I just googled

                    hashimoto lyme disease

and got a remarkable number of hits on both patient boards and otherwise.
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I'll try not to repeat what others have already said.  We'll see if my short term memory holds up!

A Lyme titer is how doctors refer to a test result that is in ratio form.  It has to do with the methodology of the test, and results can be 1:64, 1:128, 1:256, etc.  I am not sure what the cut off is for "positive."  This method was used for other antibodies before Lyme, so it was assumed to be useful for Lyme, too.  But what doctors didn't realize was that Lyme and coinfections can be immuno suppressive.  Some of the sickest patients are equivocal or negative on the test, while those only mildly ill sometime score "sky high" titers.

You can google "Tom Grier Lyme Testing."  I think he has some pretty good explanations of testing.  I also remember looking up an explanation of the Lyme titer as I was confused by the numbers.

A quirk of Lyme is that it doesn't really like to be in the blood. It can drill its way through blood vessels into organs and nerves and joints. It prefers low or no oxygen environments, so it's common to find it in joint fluid and connective tissue (such as in the thyroid, adrenals, ribs, and between muscle and bone). As it moves out of the blood, the body produces fewer antibodies against it.  People infected with Lyme disease more than a year are reported by LLMDs to be more likely to test false negative on the CDC testing protocol (which has never been validated using blood of long term Lyme cases) because antibody production drops over time.

Unfortunately, the ivory tower researchers dismissed reports from the front line family physicians who were noticing this phenomenon, and still insist that the screening tests and CDC protocol for interpreting the Western Blot are highly accurate.  This is in spite of at least a half dozen studies showing that on average, the CDC testing protocol only correctly finds 56% of Lyme cases.  (see Lymedisease.org Lyme policy wonk's blog)

I personally think you do need an IGeneX Western Blot. I also went to my general practitioner for approval for the IGeneX tests as I didn't want to wait to get in to an LLMD.  I also wanted to prove to myself I had Lyme before I shelled out the consultation fee.  When my doc hesitated to sign the IGeneX form (a specialty lab, I told her), I just told her that I was prepaying it and I didn't care if insurance covered it or not. I was that desperate. She signed it and I was so relieved.  It turned out that because she signed it, my insurance reimbursed 2/3 of the cost. If the out of network LLMD had signed it, they would have reimbursed me zero.  Check with your insurance plan to see what their policies are.

If you're confused about the IGeneX testing (I certainly was), you can call them to ask for suggestions, especially if you want to check for coinfections.  Usually an LLMD will order tests based on symptoms, but sometimes they just order them all. After all, many coinfections are "hidden", and don't show obvious symptoms, but do show antibodies.

If cost is a concern, I'd go for the Western Blot first. It is most likely to show signs of Lyme.  The PCR (blood) is frequently false negative, but the PCR on urine is considered very useful after an antibiotic challenge.  You'll need an LLMD who knows what they're doing to do that.  I was so sick I didn't care about cost, and I was more concerned about false negative Lyme results and missing a coinfection.  I ordered the whole Lyme panel and Western coinfection panel.  Only the Western Blot and Bartonella Henselae tests came back positive. I could have a few hundred $ if I'd skipped the Lyme panel and just ordered the WB.  Some also order a CD57, which can help with a diagnosis. It's an immune cell that is believed to be suppressed only by HIV and Lyme.  Some docs don't use it because levels can vary a lot in the same patient.  To me, it would be useful if the result were low. Most long term Lyme patients are very low in it.  This test isn't useful for most regular doctors as they don't know anything about it.

My LLMD has seen patients with 20+ year infections.  There have even been some with 40+ year infections in people who got it as a child and have had life long problems.  Some people get sicker than others, probably because of the genetic strain of the Borrelia, individual immune systems, and other factors that affect health. No two Lyme patients have exactly the same story.  Long term infection can cause permanent damage, and could explain your ravaged thyroid. I have brain lesions that probably won't heal. My family says they still love me, though, even though I've lost at least 10 IQ points!

If you have Lyme but don't have any coinfections, you have a really good chance of getting well.  If you have coinfections, you will face a tougher time with treatment.  My doc says most of his patients' treatment runs between 1 and 4 years.  I had Lyme and Bart and Babesia for 6 years before diagnosis, insufficient antibiotics in the beginning, and steroids a few months before diagnosis, which sent me into a rapid decline. I have 4 strikes against me for a straightforward cure.  I am 16 months into treatment and I think it'll be at least 2 years in total. Right now I'm in a nasty fight with Babesia, with only a few Lyme symptoms left.

I encourage you to find a LLMD and get on the waiting list.  I'd also pursue getting the IGeneX western blot, as it will help speed along a diagnosis if the results are in by your consultation.  If the WB is negative, the LLMD can do an antibiotic challenge to see if killing a few spirochetes wakes up the immune system to start making antibodies again.  Also, a good LLMD can make a clinical diagnosis when necessary.  Travel to find one if necessary.  A local Lyme support group can warn you off the "wanna bes" so you don't waste your time or money on docs who don't know what they're doing.

I highly doubt anyone but an LLMD would diagnose you or treat you properly if you do indeed have Lyme.  The good ones are worth it to get your life back!
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There is a small handfull of LLMD's around here, but I can say we obviously need more in this state, they are very busy!  The most expensive ones have sooner openings (most are mid summer).

I could just present the Igenics western blot to my insurance taking GP and pick his brain, before going to a naturalpath LLMD ($$$). Cant hurt. There are a few lymes support groups around - I can see what they say about local Drs.

These multiple test are pretty confusing. If I'm going to pay a lot, I like to know about what I'm paying for and what I'm getting onto, thanks for the explanations. I wasted plenty of $ with thyroid issues in the past (thousands) and eventually got it under control with my own plan I learned, as there are no excellent thyroid Drs in this state, only a few mediocre ones and I know more than they do (their words). That's not right.

If I do have lyme or co-infections, what is the monthly cost for antibiotics out of pocket? Does it matter if a non-insurance Dr vs an insurance taking Dr prescribes it for my insurance to cover it? I ask this since insurance is only a luxury now, many jobs offer none now days. I got by without it during some bad thyroid times, thyroid issues really arent that costly once you do your homework. I keep looking for money on the trees in my yard, non so far, only pine cones and crab apples.

On the subject of thyroid antibodies, there are quite a few newer theories on their causes, but at this time, they all lack proof. Everything from chemicals to hereditary, gluten and apparently lymes. My mother had hypothyroid, its assumed I got it from her (very common).

It would be very interesting if someone with Hashimoto antibodies and lyme, got the lyme cured and watched thyroid antibodies disappear completely via blood labs. So far there has not been a study that shows this. If this happened and was noted, it would makes its way into mainstream medicine.

The problem is most studies are paid for by drug companies. Drug companies dont want us cured and drug free from anything. They want us managed as repeating customers.
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The cost of meds varies because there is no one set approach ('protocol'), partly because Lyme is still a developing area of medicine, and partly because of the co-infections, which need separate meds.

There are a lot of generic meds the docs can use, but sometimes the more expensive ones are called for --- but I would not at all be shy about telling the doc that you have financial limitations and ask him/her to take that into account when structuring a treatment approach.

If you are truly needy, I believe there is a charity group called something like Lyme TAP that may provide some assistance.

Side note on your comment re your mother being hypothyroid ... consider that you both may have gotten Lyme.  Stranger things have happened.  Lyme is everywhere.  
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The cost of meds varies because there is no one set approach ('protocol'), partly because Lyme is still a developing area of medicine, and partly because of the co-infections, which need separate meds.

There are a lot of generic meds the docs can use, but sometimes the more expensive ones are called for --- but I would not at all be shy about telling the doc that you have financial limitations and ask him/her to take that into account when structuring a treatment approach.

If you are truly needy, I believe there is a charity group called something like Lyme TAP that may provide some assistance.

Side note on your comment re your mother being hypothyroid ... consider that you both may have gotten Lyme.  Stranger things have happened.  Lyme is everywhere.  
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Ooops it double posted!  
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798555_tn?1292791151
It is Minnesota state law that insurance has to cover lyme, only a few LLMD that take insurance though. I believe this law does make it easier to get insurance coverage on the meds, but you have to fight them anyway I heard..And if you change insurance or dont have any for a while, new insurance can deny you coverage. Several years of meds is a long time and adds up fast. Insurance is for things like this, medical needs beyond your control, so much for the system. Im sure there are people that bought antibiotics in the livestock health isle at the farm / ranch supply store LOL!

I appreciate your open-mind and lyme help. On that note there are plenty of Hashimoto people that feel great from only thyroid hormone replacement (I know some). Thyroid hormone is only that, which means it will not correct anything else like lyme. So there are a lot of people with only hashimoto that dont have lyme, if they did, they would still have symptoms.

I remain stubbornly neutral on the causes of Hashimoto (until further scientific proof) from all the gluten free folks and natural Drs that say all hashimoto is caused from gluten going thru a leaky gut. And then there's some that say all autoimmune starts in the gut from low acid causing Candida causing a domino effect on the bodies autoimmune system. Ive had Candida too, fixed with herbs and eat less sugar, but it didnt effect my thyroid lab levels.  So many groups of people claim their opinion on autoimmune causes is the right one, since that's the one they know best, whatever it might be.

It could even be turned around 180 since autoimmune lowers ones immunity to infection. What if hashi people were more likely to develop lyme disease from lower immunity that cant fight off the early stages of a lyme infection? There I go thinking again.

I will admit, hearing all the sides (from all autoimmune conditions) can makes ones head spin, although interestingly.

We can think all we want (its all good), for now I just need to find out if I have lymes or not. Never heard of anything else that takes so much homework for just an accurate diagnosis. Got enough info for a game plan now at least.

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I like your methodical approach, to collect data, make a plan on how to approach the docs, and give it a shot.  Just remember to examine all assumptions in view of the fact that Lyme can affect all sorts of things that are not obviously connected with it, and that docs often don't make the connections.

Not all the meds used in Lyme treatment are expensive -- the most expensive one I was on was Mepron/malarone for babesia, but there may be other options.  My theory was that I'd do whatever it took to get well, so that if I ended up broke but well, I was ahead of the game.  Being permanently ill, no.

Your comment, "Never heard of anything else that takes so much homework for just an accurate diagnosis."  Truer words were never said!

Hang in there, you've got the right attitude.  Keep us posted.
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Kinda neat to see a familiar name on this forum;)  there is someone on this forum whose thyroid antibodies either greatly reduced or went away once they started lyme treatment, so it's hopeful!  (Their comments about it can be found under one of my posts.). I am waiting for my first LLMD appt on May 1st and though I'm not excited about the hefty cost, I am excited to finally get some answers and I was assured that they can also continue working with me on treating my Hashimoto's, just in case it is entirely a separate entity.  Which means I won't have to continue paying my other holistic md to get the Naturethroid (which btw has not offered me any relief during my first week on it).  Hopkins just ran a Lyme titer on me and I'm not sure what the difference is, nor am I hopeful that it will indicate anything.  I do know that the IgG is for recent infection and the IgM is for chronic or at least that's what Hopkins just told me.  Please keep in touch with any info or appts you have, as I'm super curious about Lyme and Hashimoto's!  I hope this offers answers and relief for us both.  As you said, hypothyroidism is bad, but at least there is a cure.  I don't think anyone without antibodies (thyroid, Lyme, or otherwise) understands how ill those antibodies make us feel no matter how "normal" the rest of our labs look.  I need the antibodies to cease to exist in order to feel better:(
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798555_tn?1292791151
I'm stubborn and grumpy and never do the best answer thing, but I just moved the mouse and somehow gave you one by accident, yippee!

Well then........People dont realize how significant eliminating Hashimoto antibodies (TGab and TPO) are. Its said to be impossible by the leading endocrinologists and associations. If this happens people need to tell others, like what few thyroid activist there are - as in the STTM site. This sort of thing needs to be documented some way. It has not happened on MH's thyroid forum or others that I know of.

Nature Throid, after the reformulation in 2009, is not as good as the old days. Don't give up on it yet though. Acella NP or Canada's Erfa work better for many - its all in the fillers used.

If you can find any post here with thyroid antibody elimination, please PM me on them if you could.

I always make the point of differentiating "regular " hypothyroid (no TGab or TPO antibodies) and Hashimoto hypothyroid with antibodies. Many are not aware of  the difference, some Drs are not either!

It is known for regular hypothyroid to go away and thyroid levels to resume on their own sometimes. Hashimoto,  is said to be a life long immune disease in every book there is, as the antibodies are said to never go under the limit once they go over. They can fluctuate, but thought to never go back under the limit. If this has happened, many people would like to know.

IF, I have remaining Lyme from years ago, I plan to find out this time.

This post is getting long.

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My doctor also called for a Lyme test and i am not sure why. I have no thyroid issues at all or at least I didn't think I did. I am just in a lot of joint pain and i am only 20. Do you know what this test for?
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798555_tn?1292791151
"Do you know what this test for?"

I'm not sure exactly what you are asking.

A lyme test (there are many with different lyme tests) is to test for lyme disease (this is the lyme disease forum), transmitted from tick bites.

the specific lyme test i was asking about earlier in this thread, called "lyme titter" is apparently useless for diagnosing lyme disease.

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Lyme gives different symptoms in different people, and joint pain is a possibility.  Maybe your doc is just being cautious, since summer is tick season.

The Lyme test does not measure thyroid function.

We'll be interested to hear what your test results are --
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