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What lab tests should I request?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by kristysmiles, Feb 13, 2015.

  1. kristysmiles

    kristysmiles

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    Kaneohe, HI
    As time goes on I feel it is less and less likely that I have CFS. Mostly because my PEM is mild to nonexistent in regards to physical exercise (mental exercise it's there in full force, hills/stairs exhaust me if that counts). I have an appointment on March 6th, with my internal medicine doctor where I am going to bring up the majority of my issues again to see if anything further can be done (I'm skeptical).

    You can read some of my history here: http://forums.phoenixrising.me/index.php?threads/reality-of-my-me-cfs.30679/

    I am currently on medication for primary hypersomnia (MSLT diagnosed), acid reflux (no tests have been done to validate), asthma (methylation test/medication does not help 'related' symptoms), and dry/light-sensitive eyes. Modafinil, Nexium, Advair, Singulair, Claritin, Albuterol, and refresh lubricating drops.

    My most bothersome symptoms at this time (outside of fatigue), are sporadic chest pain (noticeably worse after laughing, no other 'triggers' observed), increased pelvic pain (to include increased cramping during menstruation), a weird uncomfortable (sometimes painful) feeling near my larynx, and of course cognitive difficulties (concentration, memory).

    I still get short of breath and cough despite having 'mild' asthma and being on a multitude of asthma medications. I've also started having trouble sleeping again.


    In the last year my tests that are relevant/abnormal were:
    October 2014
    Allergy Screen (I'm allergic to grass and dust mites)
    Dermatophagoides Farinae Ab.IgE, Serum Quantitative 1.59 Higher Than Normal kU/L (0-.34)
    Dermatophagoides Pteronyssinus Ab.IgE, Serum Quantitative 2.42 Higher Than Normal kU/L (0-.34)
    Grass Bahia Ab.IgE, Serum Quantitative 6.80 Higher Than Normal kU/L (0-.34)
    Grass Bermuda Ab.IgE, Serum Quantitative 2.38 Higher Than Normal kU/L (0-.34)
    Grass Johnson Ab.IgE, Serum Quantitative 2.04 Higher Than Normal kU/L (0-.34)
    Grass Blue Ab.IgE, Serum Quantitative 6.03 Higher Than Normal kU/L (0-.34)
    Grass Rye Perennial Ab.IgE, Serum Quantitative 5.04 Higher Than Normal kU/L (0-.34)
    Grass Timothy Ab.IgE, Serum Quantitative 4.56 Higher Than Normal kU/L (0-.34)

    August 2014
    Thyrotropin, Serum or Plasma Quantitative 0.761 mcIU/mL (.35-5.0) Normal
    Thyroxine.Free, Serum or Plasma Quantitative 1.05 ng/dL (.8-1.6) Normal

    July 2014

    Cortisol, Serum or Plasma Quantitative 9.1 mcg/dL(not reference provided)

    Chest X-Ray: PA and lateral radiographs of the chest were obtained. The mediastinum and cardiac silhouette are within normal limits. Costophrenic angles are sharp. No evidence of pneumothorax, pleural effusion or airspace disease. There is no free air under the diaphragm. The soft tissues and bony structures are unremarkable.

    April 2014
    Ferritin, Serum or Plasma Quantitative 28.81 ng/mL (4.63-204)

    March 2014:
    CARDIO, ECHOCARDIOGRAM:
    M-mode and 2D findings: The technical quality of the study is adequate. The rhythm during the study is sinus rhythm. Normal cardiac chamber dimensions are present. Normal resting LV systolic and diastolic function. Structurally and functionally normal cardiac valves for age. No masses, thrombus or vegetations. No pericardial or pleural effusions. IVC demonstrates normal size and respirophasic response.

    Doppler and color Doppler findings: The peak velocity across the aortic valve is 1.5 m/s. There is no aortic insufficiency. There is no mitral regurgitation. There is no mitral stenosis. Trace tricuspid regurgitation is present. Unable to estimate the resting pulmonary artery systolic pressure. The peak velocity across the pulmonic valves is 1.1 m/s. There is trace pulmonary insufficiency. There is no color flow Doppler mapping evidence of intracardiac shunting.

    Conclusions: 1. Normal chamber dimensions 2. Normal resting left ventricular systolic and diastolic function with an estimated ejection fraction of 60 to 65% 3. No significant valvular heart disease 4. Unable to estimate the resting pulmonary artery systolic pressure


    I have been tested for mono, pregnancy, STDs, and thyroid problems more times than I can count.

    I have had the Borrelia Burgdorferi Ab, Serum Semi-Quantitative test. (I think this is the ELISA test.)


    Tests I think I need:
    Ferritin
    Vitamin D
    Western Blot (lyme)

    Can anyone think of anything else that might be relevant to ask for?
     
  2. daisybell

    daisybell Senior Member

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    Have you had your breathing pattern and rate assessed to rule out hyperventilation?
    Just a thought......
     
  3. halcyon

    halcyon Senior Member

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    Here is what I would probably do given your symptoms:
    • CBC + complete metabolic panel
    • IgE food allergy panel, including tests for celiac disease
    • ANA, Total IgA/E/G/M levels + IgG subclasses, ESR
    • Ferritin, TIBC, UIBC, serum iron, reticulocyte count
    • Endocrine tests (other than thyroid which yours appears to be fine) for sex hormone levels, vitamin D 25(OH)D and 1,25(OH)2D, prolactin, ACTH + cortisol, chromogranin A, PTH, serum heavy metal panel
    • Vitamin panel, including B12, folate, and MMA
    • You don't seem to have viral symptoms, but it might be good to check IgM/G titers for at least EBV, CMV, HHV6, as well as parvovirus B19
    • IgM/G titers for Chlamydia pneumoniae and Mycoplasma species, any other bacteria that you might reasonably have had exposure to (i.e. toxoplasma gondii, brucella, etc.)
     
    jsfm likes this.
  4. halcyon

    halcyon Senior Member

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    Also, you didn't mention having any GI symptoms, but if you do have them you might also consider tests for H. pylori, C. diff., giardia, and a stool O and P test for other intestinal pathogens.
     
  5. kristysmiles

    kristysmiles

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    Kaneohe, HI
    @daisybell They have measured my peak flow multiple times and did flexible laryngoscopy, I'm assuming this was sufficient to rule that out? When they did the laryngoscopy they 'forgot' to confirm or deny acid reflux.

    @halcyon I've had multiple CBC (Oct 14) and metabolic panels (Aug 14) (all normal), they routinely do those when doing any other blood work at my doctor's office. I have never been tested for food allergies, but the celiac test they did was negative. My ESR was negative, but I don't know what the rest of those tests are. I asked for an endo referral before and was denied. I did not have a period for 56 days during the time period they tested my sex hormones, so I doubt my results are accurate (Dec 2013 below). I have high EBV Capsid Ab.IgG, , but the DNA probe was negative.

    As for viral symptoms, I don't have them all the time, but I frequently get strep, tonsillitis, pharyngitis, and similar viral illnesses. For GI problems, I've noticed more irregularities (not digesting food mostly), but those symptoms don't bother me much.

    Some more relevant tests.


    Oct 2014
    Epstein Barr Virus DNA, Serum or Plasma Quantitative Probe.Amp.Tar P Negative copies/mL
    Epstein Barr Virus DNA Log 10, Serum or Plasma Quantitative PL Cancelled

    Dec 2013
    Estradiol, Serum or Plasma Quantitative 66 pg/mL
    Lutropin, Serum or Plasma Quantitative 2.0 mIU/mL
    Follitropin, Serum or Plasma Quantitative 1.7 mIU/mL

    Oct 2013
    Copper, Serum or Plasma Quantitative 131 mcg/dL 70-175

    Aug 2013
    Iron, Serum or Plasma Quantitative 124 mcg/dL (50-170)
    Transferrin, Serum or Plasma Quantitative 272 mg/dL (174-382)
    Iron Binding Capacity, Serum or Plasma Quantitative 340 mcg/dL (250-450)
    Ferritin, Serum or Plasma Quantitative 36.77 ng/mL (4.63-204)

    25-Hydroxyvitamin D2+25-Hydroxyvitamin D3, Serum or Plasma Quantitative 42.7 ng/mL (20)

    May 2013
    Epstein Barr Virus Early Diffuse Ab, Serum Semi-quantitative <5.0 U/mL
    Epstein Barr Virus Nuclear Ab, Serum Quantitative 0.513 Index
    Epstein Barr Virus Capsid Ab.IgG, Serum Quantitative 2.330 Index
    Epstein Barr Virus Capsid Ab.IgM, Serum Quantitative 0.084 Index

    March 2013
    Vitamin B12 and Folate:
    Folate, Serum or Plasma Quantitative 15.2 ng/mL
    Cobalamins, Serum or Plasma Quantitative 876 pg/mL (247-911)


    Can you provide me with data to back up your recommendations? My doctors are hardheaded so I have to convince them why those tests are necessary/relevant. (Yes, I'm looking at getting new doctors that are more familiar with my set of symptoms).
     
  6. Gingergrrl

    Gingergrrl Senior Member

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    Kristy, the last time I talked to you on PR (many months ago!!!) you were trying to see a specialist outside of the military in Hawaii. Did that ever happen and do they feel you have GWS? I know there is overlap between GWS and CFS but I do not know the specifics. I think at that time that you felt you did not have asthma but it seems like now you do? I wish I could help more but am hoping you will be able to get the help you need to figure out what is going on.
     
  7. helen1

    helen1 Senior Member

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    SOC likes this.
  8. kristysmiles

    kristysmiles

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    Kaneohe, HI
    @Gingergrrl
    I still don't think it's asthma, and that's why the asthma meds aren't helping. I have idiot doctors who insist that's what it is without doing any more tests. I found some lyme specialists in my area that I was trying to get an appointment with, but my civilian insurance has to decide if I can get a direct referral based off my military medical records or if they are going to make me get another primary care physician just to get a referral.
     
  9. halcyon

    halcyon Senior Member

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    @kristysmiles If you check out Hip's CFS testing and treatment roadmap, he includes references (the numbered links after each description) for the rationale behind testing for a lot of the things I mentioned. I hope that helps.

    With pelvic pain and irregular menstruation, have you had a workup for PCOS? As fatigue is a consequence of a lot of endocrine problems I think it would be a good idea to push for an endocrine workup.

    The other tests I mentioned would be important to assess immune health. If you feel like you're getting sick frequently these might be important tests.
     
  10. Valentijn

    Valentijn The Diabolic Logic

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    @kristysmiles - If you want to definitively rule ME/SEID in or out as your diagnosis, the 2-day CPET is pretty conclusive. If you're a relatively mild case, day 1 will be normal but day 2 will show a significant decrease in functionality at maximal effort.

    My other thought is that your pain and cognitive issues might all be related to inflammation. Have you ever tried fish oil? It can help quite a bit with inflammation, and I take about three grams per day to keep my otherwise-constant headache away. It takes about about 24 hours to start working.
     
    Last edited: Feb 14, 2015
  11. daisybell

    daisybell Senior Member

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    One more thought... Have you ever had assessment of your oesophageal motility? Your symptoms of 'asthma' plus the odd feeling near your larynx, and the fact that laughing can bring on chest pain all seem to point to GERD to me. When they did the laryngoscopy, did they rule out paradoxical vocal fold movements?

    In my work as an SLT, I have seen plenty of people with non-specific symptoms like those I have mentioned above who have abnormal motility in their oesophagus. I would have done a modified barium swallow assessment to look at that.

    Anyway, good luck with it all and I hope you get some answers and a clear plan forward!
     
  12. Starlight

    Starlight Senior Member

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  13. kristysmiles

    kristysmiles

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    Kaneohe, HI
    @halcyon

    Yes, I was reading over testing and treatment roadmap, and I’m just reluctant to believe some of the interpretations. Like “Results are considered positive only when both the ELISA and Western blot are positive.” From what I know the ELISA test is less than 30% accurate, and mandating this to be positive for a Lyme diagnosis is a stretch compared to the Lyme specific information I’ve been reading.


    I was referred to the world’s worst Gynecologist, when I went in to see him he basically told me that he doesn’t know what’s wrong with me but taking birth controls will fix it. I have had hemorrhagic cysts in the past. It could be PCOS, but I don’t have a lot of the symptoms (ex: weight gain, acne, high blood sugar/blood pressure). I’m going to bring it up again, because the pain I have feels like ovarian pain. It’s in very specific spots on both sides were the ovaries are. However, if this is the problem I already routinely do all the recommended things for treatment outside of medication.


    @Valentijn

    I don’t think my doctors could ever be convinced to perform a 2-day CPET. They did do a flexible laryngoscopy after inducing my symptoms by running on a treadmill. They also told me to stop taking fish oil due to the GERD like symptoms.


    @daisybell

    When they did the flexible laryngoscopy they were looking for vocal cord dysfunction. From what I understand this is also used to look for GERD, but the doctor made no mention of that in his report. So I don’t know if he just ‘forgot’ to look for it or there was no evidence. If it is GERD I would assume that the 40mg of Nexium I take each day would make more of a difference.


    Thanks for the help. Not sure if it helps, but I have noticed that I’ve been getting mild fevers and headaches (from standing after lying down) more often. I was tested for autoimmune conditions a few years ago, but was told that to test positive for these tests sometimes takes years. Overall I would say I've gotten better than where I was last year, but a larger variety of symptoms.
     
  14. xrunner

    xrunner Senior Member

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    Hi @kristysmiles
    Just a few ideas.
    As regards the problem with acid reflux I'd test for Helicobacter pylori, a quite common stomach bug that can cause digestive issues. Most GPs would request this test on the basis of your GI symptoms.

    Testing for parasites - sometime ago I read Simon Yu's book "Accidental Cure", I think he serves as a reservist army doctor and found undetected parasites (and dental issues) were often the cause of puzzling health problems in military personnel. I recommend the book. He combines traditional and energetic medicine. The latter I personally don;t like but his treatment of parasites with conventional drugs is something I benefited myself.



    Testing for a wide range of bacteria which can cause chronic disease.
    Garth Nicolson did some research on Gulf War illness and found part of the patient population to be infected with Micoplasma fermentans, which when treated got people better.

    He also seemed to have found infections play a role in a number of chronic diseases http://www.immed.org/fatigue_illness_research.html
    you can find a number of his presentations on youtube.

    So, in addition to parasites, I'd test for Mycoplasma (different species: fermentans, pneumonia etc), Chlamydia Pneumonia, Lyme and co-infections, Brucella, Rickettsia species etc -- anyhow an experienced doctor would know the relevant tests.
    Best wishes
     
  15. halcyon

    halcyon Senior Member

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    Well, that's kind of the "official" recommendation so that's why it's on there. Obviously, lyme testing is a very controversial area. Hip has based that document on things that can be backed up with published papers etc. Things that doctors wouldn't be able to outright dismiss.
     
  16. Olena

    Olena

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    Ukraine
    Tests I think I need:
    Ferritin
    Vitamin D
    Western Blot (lyme)

    Can anyone think of anything else that might be relevant to ask for?[/QUOTE]

    I have a lot of similar symptoms. Make a test for Brucellosis. Although it is very difficult to test, but can also be checked by the method of bio-resonance.
     
    Last edited: Mar 14, 2015
  17. duncan

    duncan Senior Member

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    If you can find a clinician and a lab that will do a WB for Lyme without the ELISA as a prerequisite, and will break out your WB results by band, I would do that.

    Also, see about the C6 Peptide test for Lyme.

    All TBDs should be explored, but most of the tests are crap, so, well....

    ETA: Sorry, I should have thought of this before. You're in the service? If you've contracted Borrelia, and you did so outside the U.S., like in Europe or Asia, US B31 kits might not pick it up. For instance, if you picked up B garinii or afzelii in Europe, or Miyamotoi (which really isn't Lyme) in Asia (or these days in New Jersey and Massachusetts etc), US WB kits won't pick those up.

    I think I read IgeneX has a new Miyamotoi test; I'm not sure if they test for Bb senso lato, which would include the three most common Borrelia species (sensu stricto, garinii, and afzelii), but obviously they do for "conventional" U.S. Lyme.
     
    Last edited: Mar 14, 2015

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