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How decide on next tests to take?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by roxie60, Feb 18, 2014.

  1. roxie60

    roxie60 Senior Member

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    It is so frustrating having to be my own doctor. I sit here now feeling slightly better than a few months ago and bewildered again by this waxing and waning of symptoms that just make me feel crazy. I am never symptom free but there are periods of time where I do not feel quite as bad but then the emotions start overwhelming me. It is like there are times I am too sick even to allow my emotions to process all I am going through, all I have lost these past years.

    I am facing evaluation again for continued disability benefits, my doctor seems to be distancing herself and I cant get in to see an LLMD until July (there was one I could see in June but they are 5 hours one way and I just felt the one that is only 3 hours away is the one I should see). So I have been trying to determine what tests to take again. Do I take some that I have taken this time a year for the last two years for comparison? Do I take some more Lyme tests to try and get more definitive confirmation? If so which tests? I dont want to waste money and time on tests that will have low probablility of helping me more forward.

    I see my PCP next week, she no longer accepts insurance, is harder to see than before and I know really doesnt want to treat lyme. So I want to be prepared to give her a list of tests I want done (I know she is getting paid and should be the one to make test suggestions but it just hasnt been that way for sometime and I still need a PCP due to all the laws we are burdened with).

    Here is one link I'm using to try and decide what is best Lyme / Co tests to get now. I am better (relative to being mostly bedridden so about 50-60% function some days). I just dont want to blow my money on tests that will not help me move forward. If I had a positive test at least my family members and firends I hope would be less doubtful and more supportive and maybe my company will continue benefits. Without it I have an uncertain future as I know many here do ....

    http://www.betterhealthguy.com/emerging-tests-for-tbis

    Has anyone done the Fry or Immunosciences lab tests described at this link? I know one person here has done the IGenex Borellia ELISPOT LTT, anyone else done this test and what did you think of the results, did it differ from the basic IGenex WB result? For those who tested positive for Lyme or Coinfections, do you think how you feel at the time of the test has any bearing on the result? I am concerned about spending more money when I feel a bit better but not sure that how I feel matters regarding Lyme test results. My first WB was Negative but an LLMD thinks I have lyme since some bands were positve or IND. I just think my antibodies are not being produced so not sure how one feels if it can influence the test results.

    I am pulling my hair out trying to figure out the best next testing step and what lab to use. What a friggn nightmare
     
  2. roxie60

    roxie60 Senior Member

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    Are serum tests the best for Chlamydia pnuemanae (sp?) Are saliva tests the best for nuerotransmitters, cortisol and hormones testing?
     
  3. Beyond

    Beyond 10% of discount in iHerb!--> PEZ915

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    I experience exactly the same!! The cyclic periods of physical well-being (relative) are those in which my emotions surface and they are pretty haunting. Definetely what happens is that our mind-body system shuts off emotion processing temporally while we are sicker. It is an emergency measure to avoid collapse.

    Cannot help with everything else, but cortisol saliva is regarded as the best to address adrenal function, and not only by "quacks". My saliva and urine cortisol are low, blood is high, god knows whta that means And probably saliva is not good for neurotransmitters.
     
    justy, taniaaust1 and roxie60 like this.
  4. roxie60

    roxie60 Senior Member

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    Just got off phone with IGenex and want to share what answers I got for everyone's benefit and before I forget it all.

    The Borelllia ELISPOT LTT is sent to Germany (Infectolabs) via IGenex. There is a $250 S&H charge that has to be paid up front via CC. Sample has to be taken on a Monday, shipped over night to IGenex, then they ship over night to Germany. Germany lab performs four tests, Lyme, Eurlichia, and two variety of Chlamydia. These are enzyme tests and suppose to be more sensitive than ELISA. All results goto doctor only. They offer multiple test panels for these four to help with costs. They overnight the test kit once S&H paid for.

    The Lyme antigen test on the IGenex test panel form is a urine test that is usually done during a antibiotic challenge.

    The HME and HGA tests in the co-infections panel is for Ehrlichiosis (I did not know this).

    Hope this helps others trying to figure out all these tests and what next testing steps to take. I still dont know which ones to do.
     
    Valentijn, Ema and taniaaust1 like this.
  5. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    I'm just curious why you are focused on Lyme vs Immune and viral stuff. Did I miss something?
     
  6. roxie60

    roxie60 Senior Member

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    I did a CD57 and it wa low so I knew immune system impaired (heck I knew that before I took any tests just based on feeling so sick, so many symps). With the CD57 results Dr suggsted IGenex so I took their basic panel but was negative but the WB had some reaction just not strong enough for a positive. So now I am looking for the next test to take to try and get confirmation.

    Over the years I have had many other tests since Dr would not consider Lyme testing. I tested positive for HPylori, low hormones, low cortisol at one time, low nuerotransmitters, low glutathione, elevated liver enzymes (not too high), EBV pos for past infection, MRI showing white spots (lessions?).

    I believe my expereince fits well with a Lyme or co-infection expereince but need test confirmation to gain suport of family and friends and to hopefully continue disability benefits. If there are Immune and viral tests I'm not sure which ones you are refering to so not sure If I have had them or not (I have had a lot of tests over the years).
     
    justy likes this.
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Roxie,

    I may be the person you mentioned who had had the LTT from Infectolab. I had it done in Europe so the shipping was less and I only had the Borrelia LTT which reduced the cost. I think this is a good test as it doesn't rely on our "maybe" ability to produce antibodies.

    This test has a good reputation among LLMDs. It is supposed to reflect the level of an active infection--thus it differentiates from old infections that your immune system might have dealt with.

    Sushi
     
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  8. roxie60

    roxie60 Senior Member

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    Anyone taken the Infecto Labs Borrelia LTT test, it is supose to be more sensitive than ELISA. If you took ELISA and then the Infectolabs ELISPOT were the results dfferent?
     
  9. roxie60

    roxie60 Senior Member

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    Thanks for your reply Sushi. I am feeling better now so I am wondering if the ELISPOT would not be useful since I am having fewer symps, feeling better would that indicate not an active Lyme? It seems the Bb. ELISPOT is just to find active infection, how does one know when lyme is considered an active infection, I presume it would be when we are most sick but I dont really know.
     
  10. roxie60

    roxie60 Senior Member

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    My PCR from IGeneix was negative but WB has some weak lyme bands response just not enough for a postive test result so I'm still not sure this is what I am dealing with. Although just fiished 6 weeks of high dose antibiotic and I have fewer symps, a coupld of days actually had some energy but I do not know if it was due to antibiotics or just the normal waxing and waning if this illness.
     
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Borrelia seems to have life cycles (it's forms morph around) that affect your symptoms but I believe that "feeling better" (which might correspond to one of the Borrelia life cycles) would not affect the LTT test. From my understanding, the test only shows negative when the infection has been knocked out.

    Sushi
     
  12. roxie60

    roxie60 Senior Member

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    Thank you.. I have a big decision to make since these tests are so expensive.
     
  13. taniaaust1

    taniaaust1

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    oh what a nightmare for you.. **hugs**

    I think with this stuff the most important thing is to have a good supporting doctor to help back up how sick one is seeing with a lot of this stuff its not easy to prove (and most of our abnormalities are ignored anyway by places such as disability payment places).

    Can you defer things till you see the LLMD? You could get screwed over by a doctor who isnt being fully supportive (that happened to me.. my specialists were great with backing that I was quite sick but i had a GP who didnt believe I was sick.. so he was even ignoring my specialists but not telling me how he felt about ME/CFS..nor did he tell them what he believed about ME/CFS either... this GP quite possibly played a part then in affecting the decisions of gov. depts!!! One may have several doctors backing but it only takes one bad doctor to screw someons case up.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    If you just get the Borrelia LTT the test cost is 184 euros....but then there is the shipping. :(

    Sushi
     
  15. Valentijn

    Valentijn Activity Level: 3

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    I took the LTT and the Western Blot. Completely negative on all bands of the WB, extremely positive on LTT.

    I've also repeatedly tested negative for past infection of a virus (EBV) I know I've had. So I think my immune system is pretty screwed, and doesn't give accurate results on certain types of tests.
     
    roxie60 likes this.
  16. roxie60

    roxie60 Senior Member

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    It will cost $705 US to take the LTT which includes S&H to Germany (three of the tests, not four - maybe one of you @Valentijn @Sushi that has taken the LTT can explain the difference for me regarding the two Chlamydophila tests they do in Germany, I know one of them is pneumoniae but I did not understand what the other Chlamydophila test name was and if it is a variety I would be exposed to here in US, if I take the additional Chlamdophila test the cost will go up). In addition I need to see my PCP next week who no longer takes insurance so that is going to be $300-400. Is Chlamydophila just another name for Chlamydia? Is a serum blood test the best method of testing for Chlamydia if they are indeed the same.

    I'm still trying to decide which tests to take. I am up for re-eval by my company to try and keep my disability benefits. If they drop me then this will be the end of the line for me trying to get more definitive testing results which I want not only for continued disability but to feel confident about the right approach to treatment. I am also consisdering the IGenex Complete C0-infection Panel 5095 which will test for Babesia microti, Ehrlichia and Bartonella (I think I was infected in Florida but not 100% certain). I also think there is a chance I have Mycoplasma but last Dr I saw tried to discourage me from getting tested because testing for this is so unrelaible and yet I see where others have been tested for it and were positive (I just dont know where they got the test). I also think my ol 'friend' Hpylori is back but that would be yet another test. What a maddening expereince trying to navigate the medical minefield.

    If I do the IGenex tests I can get the results sent directly to me with Drs approval. I've been told I cant have the Infecto labs results sent directly to me even with Drs approval (I now ask for this since it is so hard to get into see my Dr or hear back from her, also need for my file). Anyone know if I can order directly from Infectolabs and skip the IGenex middleman which is only shippig the sample onto Germany?

    I usually get neurotransmitters, cortisol and hormones tested this time of year (for comparison purposes) and a blood chemistry panel. If I do all these tests this is probably another $500. I have a counselor appointment today and I just dont no why I bother to see any doctors anymore. I have tried diligently for years to find answers, spent loads of money, had loads of blood drawn, taking supplements I'm not even certain what is in them and if thy are doing me any good (at least what I'm taking now doesnt seem to add to my symps but how would I really know. Most of them are white powders and I have lost so much trust I question what they are all made of).

    I have been extremely irratable lately, impatient with myself and others when I cant get things to work (drop things, forget things, missing my old self/life). I feel I am at the end of my rope and I need definitive answers as to what is wrong with me. I seem to be able now to do about one task or a couple of small tasks a day. I have seen some slight improvement in symps and yet I cant say for sure it is due to the antibiotics or just a waning period before the next crash.
     
  17. roxie60

    roxie60 Senior Member

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    Article from BetterHealthGuy regarding Mycoplasma.....dont read on an empty stomach or if your emotions are already on edge.....goes to the question what if these bugs were introduced to the population on purpose....to see who would survive???? I dont want to spend the energy thinking about the criminality of that thought.

    http://www.betterhealthguy.com/images/stories/PDF/PHA/2009_07.pdf
     
  18. brenda

    brenda Senior Member

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    Which antibx were you on and did you herx? The fact that you improved, most likely means that you have Lyme, which for some doctors, would qualify for a clinical diagnosis. It would be cheaper to consult one of these than further testing. Stopping antibx too soon will mean that the borrelia will have changed to cyst form and when they hatch, you have a bigger infection on your hands. In the meantime you could get on some herbals.
     
  19. roxie60

    roxie60 Senior Member

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    I was on 3000mg of Amoxy. I did not herx.
     
  20. vamah

    vamah Senior Member

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    My doc also thinks mycoplasma testing is too unreliable to be worthwhile. Instead, I am doing a trial of doxycycline, which I have been on for a month now. I didn't think I was herxing at first, but now I think I may be having a neuro herx because depression has gotten much worse, as well of feelings of detatchment. Also I have been getting headaches that aren't typical. I'm going to stay on for 6 mos and see if I feel better. I've been on long term doxy a couple other times, so I feel comfortable doing this.

    I can't believe the cost of the LTT. Are there any US companies that do the test so you don't have to pay for shipping? I looked into the German one at one point but decided I didn't feel strongly enough about lyme to spend that much. I hope you can find he answers you need.
     

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