Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Absolutely NOTHING is positive?

Discussion in 'Diagnostic Guidelines and Laboratory Testing' started by Automobilie, Sep 23, 2014.

  1. Automobilie

    Automobilie

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    Hi all, I've been lurking here for quite a while and finally made a profile. I'm a 22 year old college student (Was I guess) and came down with something the start of 2013. The first year, I'd get crashes that were extreme nausea, weakness, and would lose my appetite. Only had about four major crashes and some minor ones that just required laying down for a couple hours, fatigue really didn't seem to be a main problem then, mostly nausea during crashes and I'd feel depleted, but could do stuff and be out late without crashing.

    Next year has been a lot harder and I've gradually gotten more and more home bound and can't leave the house anymore. Viral symptoms weren't much of an issue aside from a flu-achy feeling for a few days at a time, and the light headed pass out feeling seem to have started after taking Lexapro for a month. Laying down I've had BP as low as 85/33, but could stand up and it'd be 100/60.

    Anyways, what I want to ask about from reading other people's reports is is it common for nothing at all to be positive? Most people seem to have measurable deficiencies, positive virus titers and other things. All I've had was some exposure to EBV (which went down and no viral symptoms), low vitamin D which came up quickly, low blood sugar which has been stable this year and not correspondant with crashes, and a couple other very minor things. I know CFS means "There's nothing wrong, but you're also perfectly unhealthy", but it always seems there's things that show up? I don't know what to correct and if I don't get busy soon I'll be lucky to not be bed bound next summer.
     
  2. alex3619

    alex3619 Senior Member

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    Hmmm ... they looked in the A box for findings .. .no. Then C .. no. Then F ... no. Then N .. no. Then Z ... no. Therefore they concluded nothing is to be found, as they went from A to Z. What about B, D, E, G etc.?

    If they run the wrong tests they will finding nothing. This is no surprise. There are probably millions of possible tests, docs run a few thousand different tests in their careers. Often its probably only hundreds that get routinely run.

    Your BP does not fit the usual OI issues.

    Have you looked for lists of recommended tests and then compared yours?

    CFS never means there is nothing wrong. It means they haven't found it, found it and dismissed it, or don't understand what they found.

    If you want more advice, you might need to post which tests you have had. Then people might be able to recommend more. However you can search for recommended tests as I already said.

    You might not have CFS either. You definitely should be considering other options. This could be a good thing, as lots of things are much easier to treat than CFS.

    I would start by asking your doc about an MRI. Look at your family medical history, does anything pop out? Consider looking for a doctor knowledgeable about these issues.
     
    WillowJ likes this.
  3. *GG*

    *GG* Senior Member

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    Can you get out of Alaska and find a good Dr. Assuming there are not many/none in Alaska?

    GG
     
  4. Daffodil

    Daffodil Senior Member

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    probably want better testing....not sure if the tests there are accurate. try to see a CFS specialist, if you can. try to get LTT ELISPOT for borrelia.
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    Also, what did you mean that you had some exposure to EBV? Did you actually contract mono where you were sick (or did you test positive for the antibodies but never knew you had them?)
     
  6. Alea Ishikawa

    Alea Ishikawa

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    @Automobilie - It might be good to talk with your doctor about the Lexapro and/or any other medication you are on. Lexapro can cause several side effects. The FDA recommends talking to your doctor if the side effects continue over time. If you are becoming more and more housebound over the year, then it might be worth looking into. Lexapro shouldn't be stopped quickly, either.


    Some ME/CFS lists are the CDC, CCC, and ICC. Also see the IACFS/ME Primer. Has your doctor suspected or diagnosed CFS? Usually, CFS is suspected only after several other issues are ruled out.


    My suggestion would be to run other basic tests first, if you haven't already. Check electrolytes, B12, folate, iron, etc.

    Unless the EBV testing was done while you were sick in 2013-2014, then I would suggest getting retested. EBV can become reactivated.

    Also consider a tilt-table test (TTT) to rule out clinical dysautonomia like OI/POTS. If positive, you may be able to find something that helps the condition. Dysautonomia is also implicated in CFS.


    Neurology might be good to perform an MRI or other brain scan and rule out issues there. Endocrinology can check hormones and might run an ANA (autoimmune disorder test). An allergy specialist could diagnose environmental allergies and offer immunotherapy shots or sublinguals.


    If other tests are run and CFS is still suspected:
    See lab tests for CFS, most of which can be run via LabCorp. (Ignore "Ganciclovir Antiviral" as this is a measure of medication.)

    Hip has an ME/CFS Roadmap for Testing and Treatment.

    You can get a 23andme test done to help determine genetic polymorphisms. This can help guide supplementation and treatment. A $99 test could prevent you from spending more on supplements you may not need or guide you to something you could need.

    You could also attempt Dr. Rich Van K. (richvank) or Fred (Freddd)'s methylation protocol, which use specific forms of folate and B12. If your methylation cycle is sputtering and then is able to get cranking again, it can increase your glutathione. Glutathione is a major antioxidant and is found to be low in CFS and in chronic illnesses in general. (Note: Folate can be a factor in depression here, here, and here, so you'll have to handle this carefully in tandem with your doctor. There can also be significant side effects from methylation protocols, so please research thoroughly and use caution if you attempt!) Methylation may help symptoms but may not cure you.

    Dr. Andy Cutler also has a mercury detox program using DMSA and ALA. Please research thoroughly and be sure to take the recommended antioxidants before and after amalgam removal. Not doing so can have a significant negative impact.


    Is your BP a typo? A diastolic of 33 would send someone into a coma! See chart here.
    If that's not a typo, and it's safe to do so, I'd recommend trying a bit of salt in your water to help with your BP. I've heard some people dissolve bits of salt on the tongue over time and then follow with water.


    I second this. It's only when more specific tests are run that someone can come up positive! Those who come back fine on a basic blood panel can actually be very ill.
     
    Nielk likes this.
  7. Automobilie

    Automobilie

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    Thanks for the responses guys!
    Ok, so I only did the low dose Lexapro for a month, started having trouble with my legs becoming sluggish and didn't feel better so I got off it and the leg thing cleared, but it seemed like I was a little worse afterwards and felt like I was passing out walking around (BP would be around 100/60 +- 10). The 33 felt pretty bad, but I was also laying down. It seems to go to 90/40 laying down, been trying to up salt intake. Saw a cardio for it, echo and something else was clear and the tilt table was clear as I didn't faint or drop BP, but had a HR of 120 most of the time.

    CBC, TSH T3 T4 and antibodies, ACTH 2x, ANA, EBV, CMV, Urinanalysis, GTT (Which I should've failed, but the doctor ignored a low between data points...), Parasite, Western Blt Lyme (No pain anyways, yet), IGE Test, POC Chem, CT scan, MRI, Xray, Hep panel, Celiac, Lymph Node biopsied (Was enlarged, but benig and not swolen), HIV, Ferritin was 73, CK, and then some naturalpath tests. All of these were negative except the EBV which....

    The EBV showed Ab-VCA and Ab-IgG were above 8 (High), but tested again later and were about gone. I don't remember having mono at any point, no fever, aches would have been a day or two at most, no lymph nodes, and no sore throat.

    My ACTH's were confusing; The first went 17 base to 23 with acth of 8, the second a year later, during a crash, went from 4.8, to 16, to 25 with an ACTH of 10, but there was a base of 8 cortisol done the next day. The head scans didn't report tumors, but maybe they didn't look?

    And lastly, I'm stuck in Alaska, I'm home with parents, but there's no way I can fly, when I crash my body shuts off and I can barely move, so I'm stuck in Alaska, last year I flew to seattle semi ok for Virginia Mason (Total flop). I did a trip to Anchorage, and have a NP helping me now, but without a direction I'm stuck.

    *Edit, possibly relevant. When I was 12 I failed the tuberculosis PPD skin test and had a granuloma in my lung. Did INH for 9 months and had some weird problems after that, but nothing like the last couple years, not even close.
     
    physicsstudent13 likes this.
  8. GracieJ

    GracieJ Senior Member

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    Find out if Dr. Denton is still practicing in Anchorage. She is good. She totally gets CFS.
     
  9. Sidereal

    Sidereal Senior Member

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    Most cardiologists don't know anything about autonomic disorders unfortunately. A heart rate of 120 on the tilt table could indicate postural tachycardia syndrome (POTS). What's your heart rate like when you are lying down?
     
  10. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I wonder if everyone here (or almost everyone?) is making exactly the same mistake that 'the cdoctors' are accused of - the idea that you cannot have an illness unless there is a positive test. When I first started medicine in the 1970s there were lots of very well known diseases that we diagnosed without any tests - either there were no tests or they were too dangerous to do. We diagnosed appendicitis on the basis of a nasty pain low down on the right side - and were confident enough to do an operation! Even thirty years later I would regularly diagnose or treat something without doing any tests. - in fact probably 90% of patient visits. I diagnosed adhesive capsulitis, sciatica, de Quervain's tenosynovitis, polymyalgia rheumatica ... the list is endless. Sometimes there were tests that helped, like an ESR for polymyalgia, but most of the time I was more confident of the patient's story than the test.

    I would forget tests. It sounds as if you have had as many as are sensible. If you have ME then all these tests are completely irrelevant anyway, since ME is not diagnosed with tests. If you search hard enough you will find one test or other a bit out of line but I very much doubt it will actually be the cause of the problem. If you do not have ME then you need a test for the other thing you have and nobody here can say what that will be I guess.

    What I think you probably need is to get to know a doctor with a lot of experience of your sort of problem who knows enough to be able to advise the best thing to do without any more tests. Be assured that having nothing wrong on tests is still the USUAL situation when someone has a real problem and sees a doctor. A bad doctor is one who refuses to accept there is something wrong unless a test shows up. Best not to make the same mistake?
     
    Mya Symons, Nielk, wdb and 12 others like this.
  11. Automobilie

    Automobilie

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    HR averages between 65-90 laying down, generally around 75. The cardiologist wanted me to up my sodium intake to 3,000mg a day, been trying to, but it's hard on my stomach.

    The thing is, I'm not 100% sure I'm dealing with ME. I've got some symptoms that fit sometimes, some that are developing into it, and some that seem to rule it off. But ME is so vague and people seem to experience different things I don't know how to be sure. I live in a very small town, but the NP I'm seeing has been sympathetic so far and I might need to come in with a list of possible tests to run and just go through them with her, but I don't know what tests there are because I'd expect something to have skewed a CBC or ANA. I thought I might have secondary adrenal insufficiency, but the Endo said I was fine. It's just frustrating and I can't just quit because my parents would probably go crazy, but my mom keeps telling me I need to go walk and move. Last year exertion didn't seem to make me crash, this year I don't know since I crash so often.
     
  12. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I don't think anyone is ever 100% sure they are dealing with ME because nobody knows quite what ME is or how many MEs there are (most people seem to think there will be several). It sounds as if you need a plan of action and a plan of action should never wait for a definitive diagnosis. It should start at the first consultation. You clearly have a problem that falls in a particular symptom area and that should be enough for a good doctor to advise the best way to go forward. Maybe the problem is that your health care system does not provide a good route to someone who knows how to take charge of your type of problem. (That would probably be most health care systems I guess!) Somebody mentioned a CFS specialist in Anchorage which I guess might be a good idea. On the other hand primary care physicians will generally have experience with at least a few cases with similar problems and sometimes they are the best people to help - in the UK that may be the case. I do not know enough myself to suggest a plan and it is not my business to advise people on their own care but I guess you want a plan to try to retain as much of your current life plan as you can while hopefully the condition resolves, as it tends to at your age. You are obviously very frustrated, and understandably so, but I would look for a plan rather than a test.

    (I am not sure who a NP is but if it is a nurse practitioner there is not much point in handing them a list of new tests. It is only going to be worth doing more tests if someone with expertise knows why particular ones are worth choosing.)
     
  13. xchocoholic

    xchocoholic Senior Member

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    Hi @Automobilie

    I bumped a thread for you titled "What labs / tests are you POSITIVE for ?". Thought it might give you some ideas. Tc. X
     
  14. Automobilie

    Automobilie

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    Thanks, I read through it and see a few tests that I havent done yet, is it common for things to show up later on? I was also wondering if any treatments work permanently? It always seems like someone finds something that helps for a few months, but alwayz crashes back and the treatment stops working.
     
  15. xchocoholic

    xchocoholic Senior Member

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    So far my biggest improvements have come from diet. I suspect my problem now is from permanent physical damage from gluten. It's in my signature.

    If you google functional or integrative medicine or gluten summit you'll get a better understanding of what's involved.

    I took most of the supplements recommended here and they helped for awhile but then I became intolerant of these. They stopped helping and I could taste and smell the chemicals in these. Bleh. I'm juicing now for additional nutrients.

    If you haven't already you may find testing your nutritional levels, food intolerances, hormone levels and gut function (cdsa) helpful. These are some of the tools used by integrative or functional doctors. I just recently saw some interesting info by Dr Osborne.

    Tc .. x

    Eta. I'm ONLY familiar with the integrative approach to healing but there's info on the web about Lyme, mold, etc.
     
    Last edited: Sep 25, 2014
  16. ukxmrv

    ukxmrv Senior Member

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    The treatments that I have found usually keep working but need to be taken all the time (i..e the antivirals drugs or immune modulators)

    However, I have tried far more experimental treatments that have made me worse for a while.

    I've not found a cure though, never had a remission and the improvements I have had are never huge (i.e. enough to get me back to work).

    Some people report a treatment that stops working. I used HCL for stomach problems and probiotics and then suddenly I picked up an infection and they stopped suddenly. This was for one symptom though and these had no effect on my core ME ones.

    It really varies.
     
    Last edited: Sep 26, 2014
  17. Alea Ishikawa

    Alea Ishikawa

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    To my knowledge, we are not endorsing this.

    Some tests can come up with nothing, but a person can still be sick. Jimells said his previous doctors ordered tests, including an EKG, which showed nothing wrong. Later, another doctor found he had "a chronic viral infection and a chronic bacterial infection, as well as abnormal NK cell counts." He was still sick before getting the additional tests. But sometimes testing can help guide treatment and lifestyle adjustments.

    Moreover, ME/CFS typically comes with several biological abnormalities, per the IACFS/ME Primer and ICC Primer. For example, Staci Stevens found issues with anaerobic threshold via 2-day CPET.

    Though CFS is currently diagnosed without a positive test result:
    If Automobilie has a more readily-curable condition, it would make sense to address that instead.


    Unfortunately, Automobilie would not be subject to the high improvement rates found in children with CFS (as he is 22). Adult ME/CFS has a ~5-10% recovery rate. If he has a type of pneumoniae or Ehrlichia, for example, waiting for spontaneous resolution likely wouldn't serve him well.
     
    Valentijn likes this.
  18. Alea Ishikawa

    Alea Ishikawa

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    It depends on what they have. Ian had dental issues, which required multiple surgeries before he got to 100%. Some people like ask2266 and SOC's daughter and uncle have found help with antivirals. Chronic Lyme might be cured with long-term use of antibiotics. Freddd improved drastically and uses methylation supps to continue his quality of life - his genetics seem to be a factor.

    Jonathan Edwards is one of the key persons involved with the Rituximab trials, which may address an autoimmune aspect in ME/CFS by decreasing B cells. A previous study noted 67% of CFS patients had moderate/major improvement with the drug. There was indication that treatment needs to be repeated to help ensure benefits.

    I've also heard of a few who have experienced remission but a taxing event (e.g. having a child) caused their health to decline again, sometimes making them severe. But, if a person is careful, they can avoid major stressors or scale back on activities when they recognize symptoms, and can potentially maintain a decent quality of life.

    Other recovery stories: here, here, and here.

    Your experience may be different. The ME/CFS community is somewhat heterogeneous.
     
    Rlman likes this.
  19. Automobilie

    Automobilie

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    The last couple weeks have gotteb alot worse after pushing myself to an appointment with a chiropractor (fraud). Left too early and I could feel myself getting sick and about 15 minutes later was in the worst crash since this started. Viral symptoms have started showing up. I guess i'll get the ebv redone and see if they can test nk levels?
     
  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I don't think you we should be so pessimistic. Childhood and adolescence pattern ME/CFS spills over into college years. The cut off for the statistical analysis at 16 or 18 is to do with medical practice, not patients. If recovery in childhood and adolescence is 80% and in adults in total is 20% I think we can at least expect a 22 year old onset to have a 50% chance of recovery on statistical grounds. My suspicion is that it may be closer to the 80% because the division in the quoted figures probably has no biological basis (just whose office you go to).

    I entirely agree that it is important to keep in mind other diagnoses and consider further tests on that basis, but most of the discussion we are getting is about unproven tests supposedly relating to ME that I suspect are a complete waste of time for Automobile.

    To my mind the key issue is probably to realise that for many things in medicine we never find a reason for why they happen when they do and why they get better when they do. And that may not be anything to do with not knowing 'THE CAUSE' as shown on a test. The human body is a very complex balanced regulatory system that can 'crash' completely out of the blue and also come out of a crash when it wants to. Think of a computer - did one ever know why a piece of software crashed when it did?

    I don't have any time for people who pretend to understand the disease in psychological terms and recommend a 'cognitive' approach. There was a recent big psychology conference where they finally decided nobody knew what they meant by cognitive anyway. But I do think it is sensible to try to find a way to cope with the illness and to latch on to handholds to get more mobile when the opportunity arises, as well as listening to the body in terms of what not to overdo. I think that would be a much more worthwhile aspect to focus on that repeating tests on EBV and NK cells when nobody knows what they mean anyway. I would bet that you will be much better in 3 years time, Automobile. I have no idea why but I think you will, if you have ME. If I were you I would not poison myself with medicines and 'supplements' in the meantime.
     
    A.B., RL_sparky and rosie26 like this.

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