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see PCP this Friday.....testing questions

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by roxie60, Mar 5, 2014.

  1. roxie60

    roxie60 Senior Member

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    I am trying to determine what testing I should ask for....what are reliable immune system tests? Should I do cd57 again, it was low last time. Wondering if I should bother with another saliva cortisol, hormone and neurotransmitters test...been reading articles that those tests are a scam. I am also trying to decide on another igenex en test or a Germany ltt test. I am beaten down by all this. I need test results to show something to keep my disability benefits. I was in bed all day. Probably will ask for AST ALT to check liver after 6 weeks of high dose abx. Is there anything out there to help lift mood and energy???? I feel like such a hopeless slouched, slug, sloth....any suggestions appreciated. Last test was igenex (neg but with 4 leak lyme specific bands) and cd57(55).
     
  2. roxie60

    roxie60 Senior Member

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    @Sushi @Valentijn I could only recall that you two had used Infecto labs (anyone that has used Infectolabs is welcome to chime in). I have the paperwork for Infectolabs and Igenex. Since Igenex was such a weak result (overall negative but some response on WB for four lyme bands). I am hesitant to pay for another Igenex test, worried results will not be any different (not a reflection on IGenex just my immune system condition).

    Now I am trying to decide and I'm leaning towards Infecto labs since they will communicate results to me directly and they have some co-infection tests I am interested in having run (I did not have any co-infection tests run at IGenex). Should I let Infectolabs know about IGenex results and CD57 or just see what they find (thinking about not telling them the other results to minimize possible bias if that is even possible).

    Some questions I have (I am also sending some of these ?'s to Infectolab).

    1. They mention specific color caps for the tubes....are these colors recognized internationally? Is a red cap EDTA tube the same thing in USA as in Germany? I want to be sure my lab will be collecting the blood in the tubes Germany expects.

    2. The Germany symptom list seems very small, not to mention that I do not have these symptoms all the time (they come and go). I was thinking about adding some additional symps in an email to them. They want me to fill out the symplist to determine which co-infection tests I might benefit from taking.

    3. Infectolab does not list Chlamydia fermentans (they test for two other varieties but my research seems to imply here in USA fermentans is often a co-infection). Did anyone also get tested for fermentans at Infectolab?

    4. I did one round of antibiotics in January, 3000mg/day Amoxy, the last dose was about 1/21/14. I am reluctant to get the antibodies tests again but wonder if the antibioics might have stirred up the little buggers so that they might finally show up with stronger response. This is where I am torn, I believe is comparing apples to apples and if I do the antibodes test (Borrelia WB) part of me thinks it should be done at IGenex again. Or maybe I should just focus on the LTT tests and forget the antibody tests for all tests. Can you tell I'm confused. I want to make the dollars I spend end in useful information.

    5. Are Infectolab results accepted by CDC? If they come back positive I want to finally be counted and added to the CDC's bogus numbers!

    6. I have to convert dollars to Euros but I expect Infectolabs will send me an invoice once I decide on the tests I want. The form asks if I want to send to my doctor the results and to me or to my doctor (requires her signature), I seem to recall people having issues getting a copy of the results if they marked both was that your expereince?

    7. Looking at the Infectolabs test form (which is really tiny print) here are the tests I'm thinking about (is it overkill? still not sure about taking antibody tests, I feeling slightly better sortof).

    - Borrelia Elispot LTT
    - Borrelia IgG IgM Blot ?
    - Ehrlichia LTT
    - Ehrlichia IgM IgG ?
    - Bartonella IgG
    - Babesia IgG
    - Chlamydia pneu and trach?
    - Chlamydia LTT pneu and trach?
    - Mycoplasma antibiodies
    - Ricketsia IgG ?
    - Toxoplasmosis ?

    I know they list Anaplasma but I cnt find it on the list of tests do you guys know if this is represented by just letters (HSV, CMV, CCP - I need to look these up so I dont know if one of these is another name for anaplama). I dont think I need any other test they list but that is a guess since I AM NOT A DOCTOR and I CANT FIND A DOCTOR TO MAKE THESE DECISONS!!!!

    I'm confident I do not need EBV - always comes back showing prior infection. I dont know what Yersinia, Ricketsia, HSV, CMV, CCP, Toxsoplasmosis, Coxsackie are and need to look them up tonight. I dont need the Diarrhea/Celiac - already know I am gluten sensitive but not celiac (at least that is what Drs have said). I dont think I am going to do an PCR tests since the PCR track record is not good (my IGenex PCR for borrelia came back negative).

    I might consider the heavy metals test but that is urine test. Probably can be done here at some lab.

    Not going to do ANA since usually comes back elevated due to EBV past infection

    Any other comments / suggestions related to getting tested at Infectolabs? I have to pay them up front fro all tests and shipping and will wire directly to their account. I see my PCP tomorrow and will try to get her on board with this since she has to request the blood draw from LabCorp. I'm going to ask her to give me the blood order so I can just do a walk in when I receive the kit (is there a kit?).

    I'm sorry this is so long but I feel this is my last good chance to get some empirical answers. I'm at the point of never wanting to be tested again since it never really shows anything. I do plan to have my doctor request an ALT/AST test tomorrow. I am still not sure about the saliva cortisol/hormones/neurotransmitters test from Neuroscience/Pharmasan since I keep finind comments that those tests are scams (I have taken them the last two years about this same time (my aples to apples thingy again) and I think I still have cortisol and neurotransmitter issues - these are nearly the only tests that have consistently shown issues the past two years so I was wanting them for support of my case but all we have been treating is the hormones-guess that would show if hormones treatment is helping.
     
  3. roxie60

    roxie60 Senior Member

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    HSV - herpes test but Infectolab doesnt indicate which HSV this tests for? Is this different than testing for HHV6?
     
  4. roxie60

    roxie60 Senior Member

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    CMV - cytomegalovirus - have no idea if I need to test for this, not sure what the symp are that might imply CMV
     
  5. roxie60

    roxie60 Senior Member

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    I am still struggling to understand if there is a direct relationship of how I feel (how bad or not bad my symps are at a point in time) and possible impact on all these tests. Does it matter how one feels at the time of testing impact test results? I have felt much worse at times and very little showed on tests.
     
  6. roxie60

    roxie60 Senior Member

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  7. SOC

    SOC

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    You're not likely to find a doctor in Illinois who will give the the right tests AND interpret them correctly. As difficult as it may be, you need to get yourself to a top ME/CFS specialist. Since your disability is on the line, it's probably worth the effort.

    You say your EBV tests come back showing prior infection. Virtually all EBV tests on adults come back showing prior infection. The problem is in the interpretation. The assumption is that a high titre only means you have high antibody titres because you were once exposed, because healthy people can have high titres. What's being missed/ignored is that high titres along with appropriate symptoms can also mean a reactivated infection. The assumption is that you have an intact immune system and therefore EBV (and HHV6 and CMV) don't reactivate. Now WE know that PWME don't have intact immune systems, and so it's wrong to assume that a high titre only means a past infection, but try convincing your local docs, ignorant about immune dysfunction in ME, of that.

    Sadly, I believed that garbage about my titres only indicating a past infection for more than 4 years... and got worse the entire time. Then I saw an ME/CFS specialist who understands about these infections, got antivirals for EBV and HHV6, and improved a lot. When my daughter had clear signs of active herpesvirus infections, and the local docs claimed "past infection" we took her to an ME/CFS specialist who immediately put her on antivirals. She went back into remission. I wish I hadn't waited so long to question my local docs. Maybe I would be in remission today, too. :( Or maybe not. :p

    Non-specialist doctors simply don't have enough knowledge of this illness to properly test, interpret, diagnose, and treat. Some local docs can test for and treat some of the symptoms. LLMD can deal with Lyme, if you have it. But in general, all you're going to get from local docs is, "I don't see any problems".

    Hie thee to a doc who knows what s/he is doing (and probably also knows what is needed to support disability claims). Forget about trying to get knowledge out of the ignorant (about ME/CFS) local docs. It isn't there. You're wasting time and money looking for knowledge where it doesn't exist.
     
    Gray Lady likes this.
  8. roxie60

    roxie60 Senior Member

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    Should I tell Infectolab where I think I got infected, would that have any bearing on which tests to have done?
     
  9. SOC

    SOC

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    The herpesviruses (HSV, EBV, CMV, HHV6, and others) can have similar symptoms depending on which tissues are infected. The symptoms are very similar to ME/CFS symptoms, so if you have typical ME/CFS symptoms it is reasonable to suspect one or more herpesviruses. If you're testing, you should test for all of them.
     
  10. roxie60

    roxie60 Senior Member

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    I agree @SOC that Illinois is a black hole when it comes to getting good diagnositcs and treatment (unless you count abuse or being ignored as treatment). I am scheduled to see an LLMD in July, I am just tired of waiting. I'm not aware of any CFS/ME specialists with good reputations in Illinois or surrounding states. My EBV titer is not high, at least not when tested, it was just slightly elevated. There is a doctor near Detroit that treats with antivirals but he scares me, I no longer want to be treated like a nail by doctors that have specialized hammers looking for a virus. I guess my trust in doctors is at all time low. I cant believe how many years , counts less funds spent tryig to figure out what is wrong. There is now suspicion that I have lyme (CD57 low and IGENEX negative but with lyme specific bands showing up). I'm tryig to figure out what to do, who to see, what tests to do. I cant believe the wait that people with possible/confirmed lyme have to wait. I reserched 3 llmds and all were at least 6 months or more.

     
  11. roxie60

    roxie60 Senior Member

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    The chlamydia tests appear to be related to STD or pneumonia. Cant find Fermentans at the Labs online web site. When I put in Anaplasmosis it takes me to the Lyme page.
     
  12. roxie60

    roxie60 Senior Member

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    @SOC I am desperate to find a doc that knows what they are doing....that is the biggest challenge.
     
  13. SOC

    SOC

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    There are no ME/CFS specialists with a broad range of treatments anywhere in the Midwest. We just have to deal with that. Dr Lerner is great for infections -- he got my daughter back into remission. But he doesn't do much else. He's also very old school -- sorta "my way or the highway". You have to cope with that if you want/need the antivirals.

    We're stuck traveling much farther for a good specialist. It sucks. It's completely unfair. But it's reality, so we might as well deal with it. We see Dr Rey in Miami these days. We have to fly out there once or twice a year. We do the rest by phone consult. It's not ideal, but it's loads better than not having a good specialist. The difference is bedbound and feeling sick and in pain constantly, or being largely (not entirely) housebound without being sick and in pain all the time. Or in my daughter's case, the difference between almost housebound and remission. It's worth it.

    I have (had, they moved) friends with several family members with chronic Lyme who went to Missouri to see Dr Crist. They are very happy with him. It might be worth seeing if you can get in to see him sooner.
     
  14. roxie60

    roxie60 Senior Member

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    Toxoplasmosis T. Gondii - I have had cats for many years....this one should probably go on my list.
     
  15. SOC

    SOC

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    Looks like you're going to pay a lot of money for a lot of tests that, 1) may not be necessary, and 2) might not be properly interpreted in the context of ME/CFS if they are necessary.

    Seriously, you need a doc who knows something. Getting a lot of tests is not going to do the trick. Hundreds, if not thousands of ME/CFS patients have been there, done that, got no treatment (and insults and recommendation for psychotherapy) from local docs.
     
    Gray Lady likes this.
  16. roxie60

    roxie60 Senior Member

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    @SOC, I have an appontment with Dr Crist currently for end of June but trying to see an LLMD that is closer if possible. Dr Lerner, he might be the virals Dr I was thinking of , is he near Detroit? I have seen a boat load of doctors with the his way or the highway attitude so I struggle a bit with those kinds and I also felt he was narrow minded, only focuses on virals. If I would test positive for virals I would go see him. I feel test results should help determine treatment path and specialists I see. Nothing has really been tested regarding virals, I will bring that up tomorrow with PCP. I just think my case is way out of her abilities and understanding I I get that my case is not easy.
     
  17. roxie60

    roxie60 Senior Member

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    It comes down to finding a doctor that understands but Dr L is the only one mentioned, he is not a CFS/ME specialist. How does one find a ME/CS specialist in the USA? I have been studying a lot but still no closer to finding a doctor I feel gets it. Now going to try lyme doctor because finally it looks like that maybe what I have been fighting gor 10 years. Once I had an idea it was lyme I reserached sought lyme doctors (another difficult path) and found 3 that I felt I could possible drive to see. All had 6-8 month wait. I asked to be added as a patient to Dr C in Misourri and Dr L in Indiana. I exlcluded the doctor in WI due to 7+ hr one way trip and he also had long wait list.
     
  18. SOC

    SOC

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    Yes, Dr Lerner is near Detroit. I agree that his treatments are limited. Marvelous if you need them, which I did, but not enough (imo) to deal with all aspects of severe/moderate ME/CFS. We appreciated him and all he did, but moved on.

    I doubt your PCP is going to do the right tests or interpret them correctly for you to know whether you actually have any of the viruses often seen in PWME, but of course you will do what you like. Every situation is different, so the best thing for you is not the best thing for me and vice versa.
     
  19. roxie60

    roxie60 Senior Member

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    I'm not expectng my PCP to understand (well I would like to expect that from all doctors but reallity has set in, not going to happen) all these tests but I need something to happen, I am in limbo and I hate it, I need to make progress either in diagnosis or sysmps. I have lost my career and now am on COBRA which is expensive and only lasts another 12 months, I am running out of time to get this figured out. I wish I had a doctor that could guide me and tell me what tests are going to be the nost useful but I dont so I have to depend on myself to try and figure it out until which time God gets into a doctor that can help. In th mean time I'm at risk of losing income benefits if I dont show effort and progress. I expect these Infectolab results should be useful to the LLMD when I see her/him and should be able to assist PCP to help me keep benefits contiuing until we get this figured out. I dont know what else I can do, you keep saying I need to see a doctor who knows soemthing..well who are those doctors???? It seems all we can do is trial and error seeing various doctors and hoping they can figure it out....if there is a list of specialists for our condition I would be happy to pick a docotr and try them but I have never seen a list of CFS/ME/Lyme specialists, it seems it is by word of mouth only.
     
  20. roxie60

    roxie60 Senior Member

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    @SOC, what made you goto Dr L? Did you have a test that indicated you had virals or was it your intuition? If Dr L is specalized and not really a CFS/ME specialist did you end up finding a CFS/ME specialist?
     

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