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755322 tn?1330269114

What Igenex Tests to Order

Hi Y'all,

It's been a while since I checked in. I need some advice.

I have convinced my dear Neurologist (I've been dealing with MS for 5 years now. Maybe? ;)) to run Igenex tests for Lyme, and whatever Co-infections I want tested for. I might have to pay out of  my pocket, but its worth it to once and for all get this testing done and quit fooling around with local labs and useless test results and see where I am at. I am sure you know what I mean. And I realize these results would NOT be the tell all, end all for what most likely is wrong with me, but an image on my timeline.

She is not a LLMD but at least I'd have these results in hand.

My question is: Which tests should I ask for?

A little history. I grew up in Mass, lived outside riding horses and playing in woods and fields. After 1977 I moved to Texas and worked outside in Horticulture, in the woods, fields and so forth. I have pets, both dogs and cats. I've been bitten by ticks, remember one rash but was on back of neck and didn't really think anything about it, and had spells of fatigue, muscle and joint aches, and unexplained weakness. In 2008 was diagnosed with Breast Cancer.

After biopsies both arms and legs went numb and was eventually diagnosed with Transverse Myelitis and MS. Had double mastectomy in 08 and that was it or cancer. Now am left with horrible muscle and joint aches, claw hands, numb hands and feet, sore tendons, occasional headaches, holes in brain and cspine and general crushing fatigue.

On the two tests for Lyme I had in the past, Band 39 came back positive in 98 and band 41 in 2001. (Labcorp and Quest)

If I take a list of the tests to her, she will order them for me. Please help me get a comprehensive assessment of my current situation. Then I can proceed from there. Also, if there are other tests I should have run relative to Lyme or cofactors that can be done successfully with local lab (Labcorp/Quest) would y'all weigh in on those as well.

There aren't too many LLMDs in Texas anymore or so I've heard so I might have to go out of state for help. I plan on making Lyme et all my 2014 project. With severely limited energy and now a tight budget, progress is slow for me on getting to all this stuff. One little thing at a time is all I can handle.

Thank Y'all and be well,
Khiba
20 Responses
1763947 tn?1334055319
I was in Tx when my Lyme became really bad and in the San Antonio area there was no LLMD and maybe 2 else where but I was too ill to drive.

You most definitely have Lyme. I was misdiagnosed with MS among other illnesses since Lyme symptoms can be very similar. Especially lesions on the brain that I had. Please don't ever take steroids. I wound up in the hospital on a respirator. Mine was an extreme reaction but they aren't good for lymies.

I would get the Lyme and co-infection panel. My co-infection tests showed positive only for Bart's but I had 2 more infections that my LLMD treated based on symptoms alone. You can read Burascano's treatment guidelines on ILADS.org which explains symptoms of co-infections. If you have Medicare, that will pay for IgeneX tests.
Avatar universal
Band 39 is highly indicative of Lyme Disease. I think you're doing the right thing to pursue this.

I did the whole Lyme panel at IGeneX, and only the IgM came up IGeneX positive, but still CDC negative.  I had 2 Lyme specific antibodies that the CDC ignores, but that was enough for my LLMD to diagnose me.

If cost is a concern, I recommend the Western Blot as the first choice. It is more likely to find signs of Lyme if you have it than the other tests.  A PCR is definitive if it's positive, but it is more frequently false negative than a Western Blot.

If your Western Blot comes back negative, you could still have Lyme, especially since you've been sick such a long time.  My doc says it's their sickest patients who test completely negative, as their immune system isn't fighting back anymore.  In this case, get to a good LLMD who will do an antibiotic challenge.  That's where you take some antibiotics for a while, which start killing some of the bacteria.  The immune system takes note of these dead bugs hitting the bloodstream and starts making antibodies again.  Then, you retest.

You might indeed have to go out of state to get treated properly.  It seems from those who've posted their experience that TX is particularly harsh on doctors who diagnose or treat beyond the IDSA Lyme guidelines.  But you might find a sympathetic doc who will at least get you started on some Doxy and then retest you if the first round is negative.

I commend you for taking this on.  I think there's a very real possibility you have Lyme and if so, you'll only get better if you find a good LLMD.
755322 tn?1330269114
Thanks for answering! I suspect I have Lyme, my sister has Lyme, we grew up same area, only she never left Mass. She has been reinfected 3 times. Sigh. She recently, well in last 2 years, got some treatment in NYC and in VA and feels so much better!

No wonder I feel just awful when I take steroids. I thought it might have something to do with it. I take IVIG as a treatment for MS, thank goodness. But since I get bad IVIG flu after the treatment, Dr gave me dexamethasone to knock back the symptoms. It works great but just delays the headache a few days and then I feel awful for a couple weeks.

If I just roll with the IVIG flu and tough it out, its over after 72 hours and I get almost 6 excellent weeks of good energy and rather decent life. I am not doing the dexamethasone again. I have learned my lesson.

Also when first diagnosed they give me 4 days of IV steroids and I felt worse for months, and folks with MS are supposed to feel way better. Not me. Ugh. All this is part of why I am pretty sure its lyme, not MS.

But after having Lyme for at least 25 years, I am not so sure there is any good treatment for me. I hope I am wrong. I would like some life back.

I read Dr Burrascano's guidelines but brain fog keeps me from "getting it." So I am asking y'all for clarification on what to order for tests. Takes forever to push new info into my brain so it sticks.

As do all who visit here I am very very sure. Its ***** being sick all the time.

Cheers,
Khiba
1763947 tn?1334055319
I have been sick over 20 years too. Don't give up. I went from not walking to walking with a cane to no cane. You can do it.

I was born in Ma, got bit in Va and know tons of people like us. Long time sick but getting better. My pharmacist's friend spent 20 years in a wheelchair with "MS" she recently found out it was really Lyme and she is walking now.

We are here to help.
755322 tn?1330269114
Thank you for answering and weighing in with your ideas, Ricobord. Takes me a while to digest everything as my mind skips around and I have to force it to read all then think about it. :)

The PCR test. What is actual name of it? Maybe its one I can get done locally and save some money? I have a place online where I can order my own lab tests so if this is a regular test perhaps I can order it for myself.

I am sure I have had this since 1988 at the latest, perhaps before, but weird stuff started happing in 88. Since then, every time I get into a very high stress situation, I "relapse" so to speak, with the biggie being at the time I was diagnosed with BC. I was almost fine until they did the biopsies. Then it flared up and left me basically crippled.

I am thinking the biopsies churned up the little bugs into overdrive. Then they got into my brain and started taking it down.

I am better now after 5 years, but still have trouble with joints and tendons and vertigo and stamina. As for MS, well, they haven't found a causitive or infectious agent to speak of, so it is a catch all for the symptoms. The MS drugs are immunosuppressive, except the one I take, IVIG, which is a full immune system replacement. I like it and it keeps me from getting worse.

I want to know what is causing this problem so I suspect Lyme. I'll run off to IGenex and see if I can understand what tests to order.

I am hoping we sell our big house pretty soon, as we have a bundle of equity in it. That will probably be my treatment money. So am in a holding pattern until then.
755322 tn?1330269114
Thanks so much for your encouragement. I am bouncing between being despondent and slightly hopeful. After being sick for so long, and everyone around me happy with MS diagnosis (except me,) its hard to keep holding my chin up and focusing on finding the cause.  

I am sure y'all have gone through the full range of emotions as well. I just want some life back to enjoy my retirement, NOT in a wheelchair, or rest home.

So thanks Mojogal. I sure needed to hear you say these hopeful things.

Cheers,
Khiba
Avatar universal
PCR = polymerase chain reaction

I  doubt very much if something as complicated as a PCR test could be performed at home.

The price of a PCR test on blood through Igenex is $00.00. :) But you do have to pay for the other test(s). Which is a good thing for then you'll get the best tests done that are available now.

Rico said-----änd I ditto this completely!

"I think there's a very real possibility you have Lyme and if so, you'll only get better if you find a good LLMD"

1763947 tn?1334055319
You are so welcome. Some people I know just didn't want to think they had Lyme after being told they had MS. IMO, I rather have Lyme than the MS any day. Neither is good but there is a chance for great improvement with Lyme.

I have had Lyme for over 20+ years (my now adult daughters remembered the tick bite) I was sick on and off but it wasn't until 2 years ago that a big emotional turmoil brought it out big time. I also had a breast biopsy done which brought the Bartonella out big time. I am still having lesions on only the left breast.

Sending you healing thoughts.
Avatar universal
As much as having Lyme is not a good thing, may I congratulate you nevertheless?  Not for having Lyme, but for persevering through many years of illness and still having the courage to keep looking for answers that made sense.  May your treatment be swift, easy and sure!

About testing -- you might be able to have the blood for the PCR test drawn locally and then ship it off to the lab yourself.  It's worth asking.  You probably know the ins and outs of how that works better than most of us here.

Do keep us posted!  And hurrah!

755322 tn?1330269114
Ah ha, Breast Biopsy > Emotional Turmoil > Bartonella outbreak... Interesting (not fun I am sure, but very similar to my situation).. hmm.

Yes, I now feel hope and hoping I really have treatable Lyme/co infection and not eventual death with MS progression.
Hang in there on the left breast. Lets hope the lesions take care of themselves as you get better and better.

Sending you healing thoughts, Mojogal.. {{{hugs}}}

K
755322 tn?1330269114
Hi Jackie, Cave and everyone...

I have been to Igenex website and am waffling on which tests.. Being in Houston and having grown up in New England. Should I ask for complete "The Complete Initial Lyme Panel **: includes IFA, IgG and IgM Western Blots and PCR (whole blood and serum):

Panel 6050 #230 (Lyme IFA), #188, #189, #456, and #453"
but am waffling over the co infection one.

Would I do Western one? "5085 New Western Regional Complete Co-Infection Panel** ",  testing for Babesia duncanii, or the "5095 New Complete Co-Infection Panel** which test for Babesia microti??

Cave, yeah,  I see where they do the PCR so no I wouldn't try it at home. ;) I'm not a very good lab technician. LOL Rather leave to pros.

I used to be able to figure this out but now cannot seem to process much information so doing anything important takes forever.

OK, taking my spinning mind to do something rote and easy, with no thinking involved... doing dishes..

Cheers, All and I thank y'all from bottom of my heart for your support and help.

Khiba
Avatar universal
This is where a good Lyme doc comes in handy up front.  Ticks can't read maps, and people and animals travel everywhere, so the geographic boundaries for particular diseases are not very effective except as gross generalizations, to my understanding.  

Docs who don't understand Lyme are often quoted as saying things like, "We don't have Lyme here," but it has spread widely throughout the world in many places and throughout North America too.  Different strains of Lyme can have somewhat different symptoms, some being more neurological, others more joint-oriented ... and some of that variation in symptoms can also be just the immune system of the person with the infection ... and on top of that, co-infections that often come with Lyme can change the whole symptom picture too.

It's difficult then to pick and choose which strain(s) of Lyme etc. to test for.  It becomes a balancing act of paying to see the doc who might be able to zero in on what to test for based on symptoms vs paying for a whole lot of tests that are not necessary, or failing to take tests that could provide a diagnosis.

I know can be difficult for anyone in Texas to go the long distances to a Lyme doc out of state, but you might consider finding a friendly doc near you who will order the test, and then once those are done, go out of state for treatment as needed.  There are patient-oriented groups you can find by searching on line for phrases like -- Texas Lyme disease -- and contact them to see what approaches they have used and what docs might at least consult with you for testing, if not for treatment due to the medical board policies and restrictions.

It sounds cumbersome, and it is ... but there are so many possible co-infections that the cost at some point becomes too high to order all the possible tests.

I don't recall who here is from Texas, but you might search the messages here for 'texas' and see what you get.  Best wishes --
755322 tn?1330269114
Jackie,

You make SO much sense! What you suggest is just the right path to take.
I know I am shooting in the dark here and possibly fixin' to waste some money.... but...

I am between a rock and a hard place. I have seen a bunch of Doctors since 88 and some supposedly "friendly." But they all just want to do the same old Labcorp tests and call it a day when only the one or other band comes back either + or ind.

Finally, I have my neurologist who is willing to let me get whatever Igenex tests through her. I would like to get a "snapshot in time" before the end of the year from igenex choosing the best set of tests as I can.

I know its a long and cumbersome process and finding a LLMD around here is very tough, as most have been run out of state or retired, by coercion. I hear through another grapevine there is one decent doc but up around Dallas/FortWorth. I can't travel before the end of the year so am trapped here and trying to see where I am at before I strike out next year.

I would like to have these tests to see if there is an inkling of Lyme in me. I also know that diagnosing Lyme is a "clinical" diagnosis because the tests can be horribly inaccurate, on the false negative side, depending on if and where the critters are hiding out, and what stage they are in etc.

After the first of the year, I plan on pursuing this path and call me crazy, but would like some recent tests to show a Doc perhaps across the country, when i actually do get to go. I am concerned my neurologist is fixin to retire and want to take advantage of her goodwill before she does.

Also, she know how badly I react to steroids and other MS drugs and I feel she would be willing to go to bat for me on getting insurance to cover this by explaining she "suspects" Lyme might be involved. Then she can explain to them that we should just go to igenex instead of futzing around with Labcorp etc and that she can get me to the appropriate Dr should her suspicions pan out.

Make any sense?

I also am fearful that with this Obama care stuff, that my private insurance might get the happy idea to drop me, so I am sort of desperate to get them to cover what they will while I have them. I seriously doubt the Affordable Care Act will cover anything I need, or if they will, if won't be in any way affordable.

Maybe I should just wait and hope for the best but am tired of not be able to get any where without being highly pro active. A few years ago I had to solve my own thyroid problems and have little faith in the medical system anymore. Sigh.

Ok, its off to bed, as my head is spinning.

Thanks for all y'all do here. It helps to have hope! :)
Cheers,
Khiba
Avatar universal
I like the way you are analyzing all this, esp. juggling all the countervailing issues.

Your message above gave me a thought:  sometimes Lyme docs who are not nearby are (I believe) willing to consult with local docs on a game plan for testing and treatment.  That way the faraway doc is not treating someone s/he has never seen, in a state where s/he isn't licensed, if that's an issue for the local medical board.  Instead, it's a consultation between docs.  I'm pretty sure there are LLMDs who are willing to do that, I just don't know which ones.  

Someone here on this board may have some ideas on that point, or you can contact ILADS with the request for a doc who might be willing to consult long distance with your local doc.  

The email address at ILADS for a referral is    

contact   [at]    ILADS    [dot]   org  

I didn't know about ILADS when I found my way to an LLMD, so haven't used the referral function, but it's a start.  You sound resourceful -- and that's excellent.

Keep us posted -- !
1763947 tn?1334055319
When I lived in Tx my lifeline was to join MD Junction for Texas which I believe you can join through yahoo. They were literally a lifesaver for me as there was an MD on there with Lyme who called me often and was the first one to say no steroids.

I am glad your neurologist will let you order IgeneX. Western Blot and co-infection panel would be good but please realize you could still have a co-infection but it not show up on the test. I had 2 that didn't show positive. If you find a good LLMD, they can usually treat based on symptoms alone.
I hope drive to La isn't your only option any more.
Avatar universal
That's fantastic your neuro will order IGeneX testing.  I'd say go for the Lyme panel.

Given that your potential Lyme infection looks like MS, you'll definitely want to be tested for Bartonella.  Its symptoms often mimic Lyme, and when it's present with Lyme, there are lots of neuro symptoms.  

If you want to do the whole coinfections panel now while you have a sympathetic doc and coverage, then go for it.  When you call IGeneX to ask for the test kit, ask them which panel they recommend for a MA tick bite of 20 years ago.  They'll let you know.

I also had MS-like symptoms and had a full MS workup.  All 3 neuros I saw agreed that while my symptoms looked like MS, they didn't think I had MS. Unfortunately for me, none of them believed I had Lyme and essentially shrugged their shoulders and said they didn't know what was wrong with me.

So, in a nutshell, my patient's recommendation is

  + Call IGeneX to request a test kit and to ask which coinfections panel is best. Mention that you're on IVIG therapy and ask if this could affect any of the antibody tests. If some of the IVIG donors have antibodies to Lyme or any coinfections, I wonder if that could give you a false positive... (Don't know, just thinking out loud here.)

  + Order the Lyme panel

  + Order Bartonella tests or the whole coinfections panel.

  + Find an LLMD now and make an appointment.  

Choose carefully. There are some doctors out there who claim to treat Lyme who have no idea what they're doing.  (There's one in my area who encourages his patients to do research and then come in and ask him for whatever meds they think will work, which he'll then prescribe.  How's that for lazy?!)  The good ones have waiting lists and you could easily wait a couple months to get in.  You don't want to wait until after your test results are in, because you could easily test false negative on antibody tests for anything or everything given all your immune suppression therapy over the years.

This is just based on my experience with Lyme, Bartonella, and Babesia with MS-like symptoms.  I am not a doctor, so please see these as friendly suggestions, not a medical recommendation.

Note: You have to go to a lab that can spin your blood sample, and not all labs have that equipment.  My local lab told me I had to go to the lab at the hospital, which required an appointment.

Avatar universal
Good advice from Rico above.
1763947 tn?1334055319
Agree with Rico. My dx of MS was due to Bartonella too.
755322 tn?1330269114
Thanks Rico,

And everyone. {{{Hugs}}} to you all.

OMG, My neuro appt is tomorrow. I had it down for December 15, not November. Bad brain fog. I should have figured that out, seeing Dec 15 is a Sunday... Whack Whack Whack... wake up, Khiba... Wake up!

I gather, Rico, that I can call Igenex myself and ask questions??? The doctor doesn't have to call for me? If I understand this correctly, this would be fabulous.  I like to be in control of my health stuff when I can.


So then I can print out the Igenex information, give to my Neuro and have her order the tests for me and get the blood drawn when the time is right.

I totally understand the bit about the IVIG and boy I'll bet that could be a factor. (The treatment sure does help me a lot, regardless of my actual problem.) I'll be sure to discuss with Igenex.

Luckily, I failed copaxone within 10 days of starting treatment and went on the ivig next since I had had breast cancer. My neuro, who is exceedingly bright, didn't even suggest any other of the MS drugs,because they are immuno suppressants.

The only thing I have taken is massive dose of iv steroids, a few years ago. It kicked me to the corner, and i have only taken dexamethasone twice with my ivig treatment and won't do it again....

I'll let y'all know what happens.

It will take me a while to find a good LLMD I am sure, but I would like to have these tests before end of the year, just for my own benefit. If possible.

And thanks for all y'alls help. I would be in a huge pickle without your support and advice.

God bless everyone for all you do! Especially giving hope when hope is really at a low.

Khiba
Avatar universal
You're very welcome.  You're family now, you know.  :)
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