Titer test and update

Hi Everyone,
Well, went to neuro today and told him about all my new sxs. I also told him about what I believed was a bullseye rash that I had at one point. At first I thought he was gonna ride lymes off completely. But he didn't. He did say that lymes is rare in Texas. When he said that my heart dropped, and I thought oh great I am gonna be laughed out of here. Especially since he offered to see me free of charge.

But he shocked me, he told me that if it was a concern of mine he would order a Lymes titer test. I have read they aren't as sensitive. But since I don't have many opitions.  Does anyone think maybe this is a good start to a dxs? Also, he explained that he may want to wait for further testing when my sxs are acting up agian, because for right now all I have is a slight bit of pain in my right knee but nothing else.

Typically when all my sxs are acting up, it is a long list of neurological issues. As many of you may remember from past post. Is this a good idea, is there any average time between relaspes? I know Lyme disease can act up months to years later but is there any average time?

I am asking these questions cause I dont have many opitions. My neuro seems to truly care about me. He heard me out he offered ideas for how to treat each sx until dxs. Plus I found a slide show he did which had a bit of info about lymes, plus he was on a list of doctors who had dxs lymes here in Texas. So, I figured he has to know at least a little about lymes. So, I am wondering should I ride this out for now?

I want honest opinions but I also need people to understand I don't have insurance or a way to get around easily. I had to fight to get the medical help I am getting. With this in mind please let me know what you truly think. Also, please if you know any alternate routes, for me to take let me know. May God bless you all,

Kimberly

[JackieCalifornia]

This sounds very promising.  

Part of your symptom cycles may depend on what co-infections you could have -- these are other infections the Lyme ticks carry about half the time, and they confuse the whole symptom picture.  I didn't have symptom cycles that I could see -- others here may have some experience and advice for you.

If you think he is open-minded, you might ask him if he has read Dr Burrascano's 'Diagnostic Hints' on the ILADS website.  If he hasn't, it may alert him to something useful.  Akin to leading a horse to water but not knowing if he will drink. ....

Sending you good thoughts!  Keep us posted.

[mojogal]

Since I lived inTX, I know it is there by my TX support groups.
I am glad he is working with you. Especially for no cost.
Ditto what Jackie said.
Sending hugs and healing thoughts your way.

[UnsureMS]

Thanks to both of ya. So, is the titer test accurate at all? What does these mean they are looking at? If its similar to an ANA then I already had it done. They said their was no significant results. I guess I am gonna have to research to make sure I understand everything. Thanks again for the encouragement. May God Bless you both,

Kimberly

[mojogal]

Any mainstream test is not very reliable often times giving false negatives. That is why LLMD 's use IgeneX labs where you get more realistic results.
I am not feeling well so other can give you more details.

[JackieCalifornia]

I don't think there is a test called a 'titer test' for Lyme.  Titration is a method of testing, in which a sample of blood (for example) is diluted repeatedly until the organism being tested for can no longer be detected, in order to determine the 'strength' of the infection.

There are several types of tests used to diagnose Lyme, according to the Cigna.com website (Cigna being an insurance company):

" -- Enzyme-linked immunosorbent assay (ELISA). This common and rapid test to identify Lyme disease antibodies is the most sensitive screening test for Lyme disease.

" -- Indirect fluorescent antibody (IFA). This test also screens for Lyme disease antibodies.
    
" -- Western blot test. This test also identifies Lyme disease antibodies and can confirm the results of an ELISA or IFA test. It is most often done to detect a chronic Lyme disease infection.

"Antibody testing should be done in a two-step process, using either the ELISA or IFA followed by the Western blot test. ELISA is considered a more reliable and accurate test than IFA, but IFA may be used if ELISA is not available.

"The Western blot test (which is a more specific test) should be done in all people who have tested positive or borderline positive (equivocal) in an ELISA or IFA test."

These tests, so I read are not terribly accurate, and so need to be read in conjunction with (and not in isolation from) an assessment of history and symptoms.

Some labs are better than others, so I read, and each doc often has a favorite lab and a preferred test.

[JackieCalifornia]

PS -- The titer-type tests mentioned above are most commonly used, but Lyme specialists often also use a test which looks not for your immune system's reaction to Lyme bacteria [as the above tests do] but looks instead for genetic material of Lyme bacteria.  It's like the difference between finding footprints of a burglar in your flower bed [titer-type tests] compared to seeing the burglar yourself [PCR test]:

"Polymerase chain reaction (PCR) testing detects the genetic material (DNA) of the Lyme disease bacteria. PCR testing may be used to identify a current (active) infection if you have symptoms of Lyme disease that have not gotten better with antibiotic treatment. PCR testing is not done as often as antibody testing because it requires technical skill and expensive equipment."

[UnsureMS]

Thanks Jackie, I have been doing research I figured out all that information. I got the paper work for the blood test all it says is titer Lyme test. I am just gonna pray that this test shows something, and that it is the more accurate one. Keeping ya in my prayers as well.

Kimberly

[JackieCalifornia]

Try calling the lab that did the test analysis -- it's likely named on the test results.  Tell them you need to know what the *name* of the test is for your records, not just a 'titer' test.  I bet they can tell you.  

[UnsureMS]

Thanks I haven't gone to get the bloodwork dove yet but I will ask. Hopefully, this will give me an idea of how accurate it will be. I am gonna try to go this week to get it done. So be praying for me as I am doing for all of you.

Kimberly

[JackieCalifornia]

We'll be here!  Take care --

[mojogal]

Praying for you.

[TheDisneyPrincess]

I am so sorry to hear this! Lyme is a beast and I truly hop that it will be a negative test. Are you doing anything proactive to prevent the symptoms from spiraling out of control while you wait? My mother was diagnosed back in the 90's, but she didn't have any symptoms that were 'bothersome' so they just let it go and now.... she's bed ridden and miserable. I was diagnosed 5 years ago and started doing stuff the moment symptoms showed up, even before I was diagnosed. I'd suggest doing something as well, to avoid getting so sick on the off chance that you do have this awful disease.  

[UnsureMS]

Is there anything I can truly do? I take pain killers, for the pain and swelling. I use braces on my wrist and wrap my legs. What more can I do? I have dizzy spells, fatigue and concentration issues. I take b12 for energy, but that doesn't always help. If you can give me ideas of what more I can do I will truly look into them. I hate having to miss work when the sxs come on so strong, and it never fails they are gonna before I make it to the neuro.

Well, thanks for your support, and I will be praying for you and your mom. I figure its best to just take it one day at a time and pray the doctors hear me out. Thanks again for any help you maybe able to give.

Kimberly

[JackieCalifornia]

Magnesium (Mg) supplements may help if it's Lyme.

Any variety ending in "-ate", such as Mg malate, orortate, aspartate, citrate, etc.  I still take a variety that is a mixture of Mg citrate, aspartate and orotate.  It helps alleviate muscle pain and aches, among other things.  

I have read that the 'CalMag' mixture of calcium and magnesium does not work especially well for Lyme, partly because it may not be the highest quality ingredients, but not sure.  Everyone is a bit different.

Instead, you could try Epsom salt baths:  Epsom salt is magnesium, and it is readily absorbed through the skin, besides a warm bath being relaxing to painful muscles.  Someone here suggested a foot bath works fine if you don't have a full length tub or can't easily and safely get in and out of a tub.  That seems like a good solution.

[UnsureMS]

Thanks I will have to try the bath. My neuro told me to use heating pads, and ice for the joint issues. The issue I have is the dizzy spells. At work for me this is dangerous. He told me to drink plenty of fluid but I drink nothing but water mainly. So, I don't know what else to do. I forgot to talk to him about this while I was in the back. I only caught him as I was walking out.

Well may God bless you,
Kimberly

[Ricobord]

I had the IFA screening test.  Later, a doctor referred to it in his notes by saying that my "Lyme Titer was negative."  My result was 'less than 40,' which is considered negative.  

I believe the titer is expressed as a ratio, such as 1:40, 1:80, etc. The higher ratio indicates more antibodies.  The assumption of this testing process is that if you don't have a minimum amount of antibodies, you must not be infected.  It fails to consider a suppressed immune system that isn't producing enough antibodies for the test.

When I got another IFA done at IGeneX, they said my result was 40, which is the low end cut off for "Equivocal" (range 40-79).  But then I showed Lyme specific antibodies on the Western Blot.

Definitely pray that you show positive on this first test. It sounds like he won't run a Western Blot until he sees the first result.  Usually, the lab automatically runs the Western Blot if the screen is positive, so that you don't lose more time waiting for it. Make sure you get copies of all test results.

You might also print out that info that says that STARI patients usually test negative on Lyme tests and take that in with you.

Just remember you can test completely CDC negative and still have Lyme. I did. You might also ask for coinfection tests for Bartonella (b.henselae) and Babesia.  While they can also be false negative, they might show something.  My Bart antibody test was actually positive, although my three Babesia tests were negative. (Finally figured out 11 months later that I do indeed have Babesia.)

If the standard testing comes up negative, then go for the IgeneX WB and PCR.

[UnsureMS]

Well, Monday I am gonna call and see which titer test they do the ELISA, or IFA. They said results can take up to two weeks. All I got to do right now is wait and pray. Thanks for all the advice and support. Praying for all of ya,

Kimberly

[JackieCalifornia]

Hang on!  Two weeks does seem like forever sometimes, but maybe the holidays will help it go by quickly.  Fingers crossed!  (X)