Starting out with questions

[Brucergoldberg]

Back in 2010 I was hit with some massive symptoms all at once.  The only thing they found wrong with me was low thyroid and hashimotos.    I have tried every hormone and every dose known to mankind.  I cannot seem to get any better.    Symptoms include;
Ear ringing
Anxiety
Electrical sensation
Agitation
Uneasiness always.  

I could go on and in about all the stuff I have been through but so far I have no solid answers.

I don't know if I have lymes.   I've never been bit by a tick or at least not that I know of.   But at this point anything is possible at this point.    

I ordered a lab kit from ingenix.   My doctor also said she would order any tests I would like ordered from lab corp or quest.     Can anyone please tell me what tests to order from ingenix or link me to a list?

Also what can I order up from lab corp?   I would prefer getting as many tests through lab corp as I can and the rest from ingenix.   Is there a list somewhere someone can direct me to?

Do these possibly sound like Lyme symptoms?  Help!

[JackieCalifornia]

Sent you a private message with more detail than is necessary for this main page.

Bottom line:

No, I can't recommend what tests I would pick.  The symptom overlap among Lyme and the various possible co-infections is quite complex, and since a doc would have to prescribe whatever treatment is settled on, the doc is imo the right person to pick which tests are most appropriate for a given individual.  

And the tests aren't cheap, so I found it worked well for my LLMD to decide what tests to order.  That's why he gets paid the big bucks:  for his experience, wisdom and insight.  

I always asked if I had any questions, and would go home and read up on what I was being tested with, for and by which lab, but I saw no reason to try to contradict my doc's determinations.  And believe me, I would have if I had thought I knew more than he did on a particular point.

Bottom line:  Lyme is not a do-it-yourself project, and my doc's decades of experience and his kind wisdom were what I needed.  

[Brucergoldberg]

ok here are my questions phrased a little differently.   Lets say that someone ( in this case its me)  has a limited budget but wants to get started on some of the testing.  And then lets say a person ( that would be you) has had all the tests done.   Which tests would you recommend i at least start with?   There has to be an answer out there such as " if you were to pick 5 tests, i would probably start with Igenex test ABCD and lab corp 1234, those are good ones to start with".

Or heres another way of phrasing this.   When you went to go get your initial tests done, which tests did you have done?    When you went to eat your vegetable soup, you must of either liked it or realized you didnt like it so you can tell the next guy if you recommend it.  If so, which vegetable soup did you eat and how would you of ordered it differently.

I have had these thyroid tests for example.  If someone were to ask me which are the ones to start with here is my answer:

TPO / TSH / FT3 / FT4 at the minimum with a sonogram.

Then if you were able to test B12 / D / Cortisol and sex hormones id do that too.

Then after you got on hormone in 5 weeks id do Tsh / ft3/ ft4 / rt3  and if you still feel crappy i would do some adrenal testing.

Of course every doctor is different, however from my personal experience, that is what i have learned to be the best essential course in my opinion to what tests someone should run.  

So now its your turn.   If you chose tests on the IGX,  is the 6050 the one you would pick?

And on lab corp, besides the cd-57  is there anything else that You personally  ( not a LLMD, but I'm asking YOU your opinion) would choose?   Surely you can tell me what you would pick?

[chiccam]

Thanks Jackie

[JackieCalifornia]

and PS

there may be some confusion about what IgG and IgM are.  They are NOT indicators of a specific disease.  They are instead short for 'immunoglobulin G' and 'immunogobulin M' -- they are the reaction of your immune system to various infections -- they are antibodies your immune system produces to kill the bacteria that have invaded your body.  

IgM is created by your immune system early in an infection.

IgG is created by your immune system later in an infection.

This is true not only for infections by Lyme disease, but by other infectious diseases too.  It's your immune system at work.

[chiccam]

I hope you get your answers. I wasn't really thinking lyme until I recently watched the documentary on Kathleen Hannah and It really got my attention.

I have all the symptoms that you do plus others; physical and neurological which made me think about MS but now I am looking at lyme.

I do remember being bit by a tick but I had zero follow-up at the time because I was partying as a teen and didn't want my parents to know that I had ditched school and partied in the woods and hey...by the way I was bit by a tick.

You mentioned all the ringing and I totally get you on that. Has your hearing been affected? I have poor hearing now but still get the ringing.

What else have you been tested for?

[JackieCalifornia]

You ask, "Am I wrong to conclude there is basic testing when positive would then require additional testing for co-infections etc?"

In my experience and from what I have read, the doc discusses with you what your history and symptoms are, does a physical exam at some level [if you have a rash to view, for example], and then based on all that data, decides what tests s/he recommends be done -- not just for Lyme, but for whatever other infections you may have too.

The symptoms of Lyme and various co-infections blend together and overlap, which makes it hard at some level what the infections may be ... but an experience 'Lyme' doc is good at figuring out what symptoms match up with which possible infections.  All of it looks like a blur to the patient, because whatever we've got hits us all at the same time.

It's like ordering vegetable soup at a restaurant:  you can tell which bits are the potatoes and onions, but it might be a little more difficult to tell what spices are also in there.  An LLMD is a master chef.

And also bear in mind that you can have one or more co-infections *without* having Lyme at the same time.  It just depends on what the bug that bit you was carrying.
-------------------------------------------------
You ask, "I found a local lab where I can walk in and be tested for IgG and IgM, then if those are positive or at least one of them I would then require the Western Blot test?"  If I understand your questions correctly, the answer is no.

Here's why:  the Western blot test will look for antibodies against Lyme -- that is, antibodies that your immune system would make to fight the Lyme bacteria.  If there are antibodies found on the test, then it is an indication that your body has Lyme bacteria in it.  If there are no antibodies, then that indicates that your body may not have Lyme bacteria in it.

The Western blot test is not precise, because it is looking for your immune system's reaction to Lyme bacteria.  The trick is that Lyme bacteria have the ability to suppress the activity of your immune system, so the test can be negative, but you can still have a real case of Lyme.

There is nothing 'secretive' going on.  The tests for Lyme are completely different from the tests for other infections the 'Lyme' ticks often carry, including ehrlichia, babesiosis, bartonella, rocky mountain spotted fever, and probably some others that escape me at the moment.  The doc takes your history and asks you to describe your symptoms, so the doc can line up in his/her mind what to test for.  

Sure, you can go in and demand to be tested for every possible tickborne disease known to modern medicine, but it would be like taking your car in because the brakes are squealing and the mechanic insists on checking the transmission, when there is NO indication that the transmission has any problems.  

You say, "You can understand my desire to walk into my Drs. Office lab results in hand. Verses convincing him to test for lyme which surely would end in several unnecessary testing."  Yes, that makes sense.  

But it would be a waste of time and money to test for every single possible tickborne disease known to medicine.  That's what docs are for:  take a history, do a physical exam, order some tests ***based on your history and symptoms***,  and see what comes back.  No conspiracy, just logic.

[Brucergoldberg]

i hear ya.   the problem im having is unlike hashimotos,  everything seems so secretive with this.   i could tell anyone in 30 seconds what tests to have with hashimotos, and if you told me you had more money, i could probably add to that as well.   but with lymes, there seems to be one standard answer on everything you ask.  

[chiccam]

I'm follow this thread as I too have Hashimoto's with an array of other symptoms.
I'm also interested in just the basic initial testing for Lyme disease. Am I wrong to conclude there is basic testing when positive would then require additional testing for co-infections etc?

I found a local lab where I can walk in and be tested for IgG and IgM, then if those are positive or at least one of them I would then require the Western Blot test?

You can understand my desire to walk into my Drs. Office lab results in hand. Verses convincing him to test for lyme which surely would end in several unnecessary testing.

Bruce- my doctor has said that all the above symptoms you've listed can all come from Hashimotos. I'm here with you brother....it *****! Today currently words are slurring. Probably took me 20 mins to write this

[kathloj]

I had #188 and #189 done by Igenex (my GP agreed to sign for those after I told him they were recommended to me by a LLMD) @ $260 total. If they come back NEG, remember to look at the bands and the + or IND numbers beside them because they could be significant for Lyme disease even if it says Negative.
The LLMD diagnosed me with Lyme and 2 co-infections based on a clinical diagnosis and my Western Blot Igenex results which stated NEG, but there were bands on it showing that I'd formed antibodies to Bb spirochetes.
Good luck!

[JackieCalifornia]

Pasted below is the advisory from IGeneX's website for tests to order.
--------------------------------------------------------------------------------------

IGeneX, Inc. Reference Laboratory Specializing in Lyme and Other Tick-borne Diseases

Based on our tracking, as well as input from our referring physicians and our clinical consultant, the initial panel to order for Lyme disease is the Complete Lyme Panel.

The Complete Lyme Panel includes the IFA, Western Blots and PCR. The IFA (Immunofluorescent Assay) is a screening test for antibodies against Borrelia burgdorferi, the causative agent of Lyme disease. The Western Blot tests determine the specific type of anti-B. burgdorferi antibodies an individual makes. The PCR tests detect B. burgdorferi-specific DNAs.

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

FOR NY RESIDENTS:

5010 - Initial Lyme Panel:
Includes Test 188 IgM Western Blot
189 IgG Western Blot
453 Lyme PCR, serum
456 Lyme PCR, whole blood

Note: If a patient’s Western Blot is positive by either IgM or IgG and has only bands 31kDa and 41kDa, there is a chance that it is a false positive due to presence of antibodies to viruses or other spirochetes. Therefore, confirmation of band 31kDa is recommended – Test 488- 31kDa Epitope** for IgM and Test 489 – 31kDa Epitope** for IgG. Addition of this test improves specificity to greater than 97%.

The follow-up test for Lyme disease, if the initial panel tests are negative, is the 875 - Lyme Dot Blot and PCR Panel**. This panel looks for pieces of the bacteria in urine as well as DNA of B. burgdorferi in the urine. Most physicians use an antibiotic challenge to make the test more sensitive. The antibiotic protocol, as well as the general instructions can be found in the urine collection kit available from the laboratory.

We also offer tests for the common other tick-borne pathogens such as Babesia, Human Granulocytic Anaplasma (HGA), Human Monocytic Ehrlichia (HME), Bartonella and Rickettsia. These other tick- borne diseases are seen in approximately 20% of the patients with Lyme disease. The typical first tests to order for the other tick-borne diseases are IFA antibody tests, dependent on the region you live or have traveled in.

The variety of Panels available are:

5080 Western Regional Complete Co-Infection Panel**
Babesia duncani IgG & IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Bartonella IgG & IgM

5085 New Western Regional Complete Co-Infection Panel**
Babesia duncani IgG & IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Bartonella IgG & IgM, Bartonella FISH

5095 New Complete Co-Infection Panel**
Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Bartonella IgG & IgM, Bartonella FISH

FOR NY RESIDENTS:

5090 Complete Co-Infection Panel
Babesia microti IgG & IgM, Babesia FISH, HME IgG & IgM, HGA IgG & IgM, Bartonella IgG & IgM

The CD57** test and Chlamydophila pneumoniae IgG** and IgA** ELISA tests are also available as part of the testing menu, though not Lyme specific. The CD57 test measures CD57 killer cells which can be very low in patients with chronic diseases. C. pneumoniae can cause acute respiratory disease, but it can persist in patients with chronic respiratory conditions and cardiovascular disease.

Test collection kits are available with shipping materials at no charge from IGeneX, Inc. – Call [phone] or send an e-mail to ***@****. Please include your name, complete mailing address and tests to be ordered.

Nick S. Harris, Ph.D. and Steven J. Harris, MD

** Test(s) not yet available for NY Residents
--------------------------------------------------------------------------------

[JackieCalifornia]

I'm sure you already know that the testing is ordered based on the patient's symptoms and history.  Given that Lyme comes with additional (often multiple) infections that need completely different testing from Lyme, there is no list that fits everyone.  And symptoms of those co-infections overlap in obscure ways that are not possible for a patient to pick and choose -- it even confuses the docs sometimes.  If Lyme were easy, we'd all be well yesterday.

It is surely less expensive to spend an hour with a Lyme doc to discuss your history and current symptoms (and then for the doc to develop a list of tests to be done) than to write up a list of what a bunch of people like me suggest based on your symptoms unknown to us.  Just doesn't compute.

I would also suspect that IGeneX will not run labs based on your say-so, and that a doc's written test orders are needed.  Call them and ask.

We're not being annoying just for the fun of it.

[Brucergoldberg]

I hear ya.   But heres my deal..   If someone could just tell me " hey man, here are the tests i had done at igenix and this is what i had done at lab corp"  I could do the same thing as them from my doctor.  then if anything is out of sorts i could go find a lyme doc.  But my first step would be basic screening.   I have had over a million dollars in testing done and everything has turned out to be dead ends except the wonky thyroid.   Thats why id at least like to explore the basic steps before moving on to seeing a lyme doc.   There has to be some place that lists all the tests and what to be tested from each lab?

There are so many endocrine tests, i have it memorized what tests to tell someone that needs to have the endocrine system explored like its my ABC's    

I completely understand the need to have a LLMD however, if someone has been through the testing I'm sure they know what tests they had run with no secret?

[JackieCalifornia]

fwiw, here's an old article that says more elegantly what I was trying to say above.  

"An Understanding of Laboratory Testing for Lyme Disease"
Journal of Spirochetal and Tick-borne Diseases
Volume 5, Spring/Summer 1998

It is still posted on the IGeneX website:

www   igenex   com/   labtest.htm

[JackieCalifornia]

Welcome --

I see you're in Texas.  From what I read, the Texas medical establishment is not keen on diagnosing Lyme disease, so it's good you've found a friendly doc.

You say, "Back in 2010 I was hit with some massive symptoms all at once.  The only thing they found wrong with me was low thyroid and hashimotos."  fwiw, Lyme can mess with the endocrine system, and the symptoms can come on quickly.

"Symptoms include;  Ear ringing, Anxiety, Electrical sensation, Agitation, Uneasiness always."  These are not inconsistent with Lyme.  

"I've never been bit by a tick or at least not that I know of."  Me either.  Took me 20 docs to get a diagnosis, and Doc #20, who ran the test that came back positive for Lyme, then told me I couldn't possibly have Lyme and dismissed me.  

So I found Doc #21 and was finally diagnosed and treated for Lyme and babesiosis.  I never saw a tick or had a rash.  That's not uncommon.  

You say, "I ordered a lab kit from ingenix.   My doctor also said she would order any tests I would like ordered from lab corp or quest.  Can anyone please tell me what tests to order from ingenix or link me to a list?"

This is where it gets tricky.  There are several tests, and the costs can pile up quickly.  That's where a knowledgeable doc comes in handy, to assess from your history and symptoms what infections you might have and then to order only the likely tests:  Lyme of course, but then also other diseases carried by the 'Lyme' ticks about half the time.  

This is where the docs earn their money:  a Lyme doc will know from your symptom array what tests to order.  Without accurate testing, the treatment may well not work if existing infections are missed and/or unsuspected infections are missed, because the variety of infections often require different meds.  A Lyme doc who knows this is worth finding, because what it costs you for the doc's time to assess your possible/likely infections is very likely less in the long run than guessing, both in wasted time, wasted meds, and wasted money.  The nonLyme infections (referred to as a group as 'co-infections') all need separate testing and usually different meds.

Not all these tests need to be done at IGeneX.  My doc used LabCorp for the co-infections, as I recall (Quest may be all right for the co-infection tests, I don't know.)

You say, "I would prefer getting as many tests through lab corp as I can and the rest from ingenix."  That makes perfect sense.  The problem is that it takes a knowledgeable doc to know what tests to have done.  Testing the entire rainbow of coinfections would almost certainly be more expensive than the cost of an assessment by a knowledge LLMD who could give you a highly educated guess of what you may have in addition to Lyme.  And also be sure your doc is comfortable with using LabCorp.  Not all labs are created equal.

So there is no list of tests to send you to, because many of them won't apply and will just be money down the drain.  Not the answer you wanted, I know.

Others here may have different recommendations, but imo getting a proper grip on what infections you have is the first and most important step to take.  Only then can you be treated appropriately, and Lyme and the various co-infections often (even usually) need completely different medications.  Otherwise you may waste time and the money you were trying to save by taking a short cut.

At the same time, LabCorp is not a bad lab, which my doc used for everything but the Lyme test, which is proprietary to IGeneX:  nobody else makes a test that works like the Lyme test from IGeneX.  If you want to skip IGeneX, you could get a LabCorp test for Lyme, and if it's positive, then you maybe paid less for the information than going to IGeneX for the Lyme test.  But if you get a negative from LabCorp, you might have missed the diagnosis.

Why?  Because the LabCorp test looks in your blood for antibodies to the Lyme bacteria, while the IGeneX test looks in your blood for DNA from the Lyme bacteria.  Lyme can suppress the immune system, thus the LabCorp test that looks for antibodies made by the immune system might not find any antibodies and thus give a 'false negative' test, saying that you are not infected ... but you really are.  The IGeneX test looks directly for Lyme DNA.

Borrow from your inlaws if you have to.  Put it on a credit card.  Apply to a charity like LymeLight Foundation or Lyme-TAP for funding for the tests if you qualify.  Without an accurate diagnosis, the meds may be wrong, and your ailments may persist, and time and money wasted.  

Sorry to be a downer.  Others here may have more congenial commentary.

[Brucergoldberg]

Initial hit in 2010:

Back pain
Knee pain
Extreme diareah
Heart palps
Nausea
Fatigue

Now:

Ringing in ears diagnosed as from low thyroid
Sometimes palps
Thyroid levels in order
Drug myself to sleep
Easily agitated
Wonkyness mid afternoon
Electrical feeling
Sometimes frequent urination
Buzzing
Ringing
Ringing
Relentless ringing