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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Autoimmune or ME/CFS or both?

Discussion in 'Immunological' started by mermaid, Nov 21, 2014.

  1. mermaid

    mermaid Senior Member

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    Having watched the Autoimmune Summit recently, and learnt a great deal more about autoimmune illness, I am wondering how would one know if you had 'just' autoimmune illness, or ME/CFS or both?

    I am sure that there are plenty in here with a diagnosis of both as I do have, but what if the symptoms I have are simply that of the known autoimmune illnesses, and that the diagnosis I had is false? How would I know?

    I had ITP (ideopathic thrombocytopenic purpura) in pregnancy (ie low platelets) and observe that some 30 yrs later now they are still lower than normal.

    I have Hypothyroidism which is autoimmune.

    Also Lichen Planus believed to be autoimmune.

    Also chronic gastritis which I believe to be autoimmune as I have had issues for 12 years, and it's not easily resolving despite trying many approaches, including food restrictions (how would I find out I wonder?). I believe I can improve that with further restriction as in autoimmune diet though.

    All this over the last 30 yrs or so, and I am now 62. I gathered the ME/CFS diagnosis along the way some 5 yrs ago, ironically via an immunologist who did no tests on me whatsoever to confirm anything with bloodwork.

    I cannot see anything especially in my symptoms that would not be explained by autoimmune illness - fatigue, immune dysfunction (seems to be improving currently under care of herbalist), needing to pace to avoid muscle pain, blood tests show low white blood cells, and low lymphocytes.

    Although i do suffer from PEM to some extent, it was never severe, and I have nearly always slept well unlike many with ME/CFS.

    I would be interested in any thoughts on this. I am tempted to reclassify myself and just say I have an autoimmune illness (or several!) if anyone asks now.
     
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  2. ahmo

    ahmo Senior Member

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    I find myself re-reading your post, feeling rather mystified.:confused:

    You clearly have autoimmune issues, and you've been diagnosed w/ ME. You have some PEM...Maybe I have an inadequate grasp of the complex issues around labelling/diagnosis. Why do you want to shift your diagnosis to just autoimmune?

    I clearly have both. Following B12/folate and pyroluria protocols has meant I've finally got the correct nutrients to fuel my body. And then there are numerous practices I'm involved in to deal w/ my autoimmune issues, including Hashimoto's. I also have listened to a few of the Autoimmune Summit, not all. I can see that there was a viral episode that preceded my decline and then collapse 4 years later. This is very common to ME.

    So I don't have any answers for you, and frankly my questions to you are none of my business!:zippit: cheers:balloons:
     
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  3. mermaid

    mermaid Senior Member

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    Thank you for your reply Ahmo. Like you I have been for several years following various protocols to improve nutrient status in my body, having got support of a private specialist who helps in this area, and after reading all I could to understand what was going on as there was nothing to help mainstream. I suspect that functional medicine would treat my autoimmune condition in pretty much the same way as my ME/CFS diagnosis.

    Along the way I began to read UK thyroid forums, and there are a number of people on them diagnosed with both ME/CFS and hypothyroidism. I noted that some of them do not believe that ME/CFS is a separate diagnosis, but simply another expression of an autoimmune condition that had become out of control. It was then that I began to read around the subject and wonder - particularly as I have a number of autoimmune conditions.

    Why would it not be possible that a viral or bacterial episode 'simply' worsened my autoimmune status, knowing that some people think that ME/CFS is likely autoimmune in any case?

    In my case I developed ME/CFS after I was diagnosed hypothyroidism, but it's entirely possible that my slow decline was due to my hypothyroidism getting out of control following the menopause, and that thyroxine was no longer working for me as it had previously (I am now on liothyronine). At that time I developed Lichen Planus, and noted a rise in my TSH when I had a TFT test around that time which I believe to be significant.

    I also had a relapse in my ME/CFS following whooping cough (non viral but bacterial) around 5 years ago and this seems to have triggered my worsening stomach issues which I believe to be autoimmune.

    Since ME/CFS is clearly not always a helpful diagnosis in getting answers or mainstream help, and there are no mainstream tests that I can have done anyway in the UK, then I may as well tell people it is autoimmune because that is where my problems lie. Autoimmune conditions cannot be cured anyway, they can only be managed, so I may as well manage it to the best of my ability.

    I am not saying that other people do not have a separate diagnosis of something else going on, which we call ME or CFS or ME/CFS, as clearly many people are severely ill without having a recognisable autoimmune label, but in my case I begin to wonder if I do have something separate.
     
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  4. ahmo

    ahmo Senior Member

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    This really makes sense. I've begun telling people I have Fibromyalgia, because I've been told by a specialist that this is the only diagnosis used here in Aus. Before, I used to say I have a chronic fatigue condition. But maybe saying I have an autoimmune condition becomes somehow easier for others to comprehend...??

    And given that there are no definitive diagnostic markers for ME, and that it may well turn out to be an umbrella term for several conditions, as Prof Jonathan Edwards has postulated, one of those sub categories will most likely be autoimmune.

    Well, to reinforce your opinion re autoimmune, I've now been on low dose naltrexone for 3+ months. It seems to have hugely benefited my stamina. Presumably by quietening the autoimmune inflammation.

    I'm just preparing to travel to the big city to be with my husband, who is undergoing major surgery. I do somehow need to convey to medical staff that I have significant limitations in my stamina. Still, sounds like the easiest short-hand is Fibro.

    OK, enough for today, time for my :sleep:
     
    Last edited: Nov 22, 2014
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  5. xchocoholic

    xchocoholic Senior Member

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    I started referring to my health status as celiac with multiple auto immune diseases since I have several known auto immune diseases. And because so many of my "me/cfs" symptoms disappeared once I eliminated gluten, etc.

    Cfs is commonly used as an umbrella term. We see this all the time on the web. I've also heard that "cfs" gets used by some doctors for women who are unhappy with being a wife and/or mother.

    There was a study recently that said Pots / orthostatic intolerance is auto immune. I suspect they'll discover pem is auto immune too or a by product of certain types of oi. I have a serious hypoperfusion problem when I stand up and I've yet to see this specifically addressed in oi studies.

    Tc .. x
     
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  6. xchocoholic

    xchocoholic Senior Member

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    I just bumped Jennifer Esposito's thread I started but got side tracked and didn't finish. Lol.

    Over the last 9 years, I've met very few celiacs who did not have multiple diagnosises prior to learning that they were celiacs. The NIH, National Institute of Health, started to address this problem a decade ago but didn't take it far enough.

    btw. I thought only Hashimoto's was auto immune. Not hypothyroid.

    Tc .. x
     
    Last edited: Nov 22, 2014
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  7. dan062

    dan062 Senior Member

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    @mermaid What @ahmo is saying makes a lot of sense.

    My personal belief is that CFS/ME is an autoimmune disease (or at least a long term autoimmune reaction to an initial viral infection of sorts), but like everything to do with this, there seems to be no end to controversies and theories, and as you point out, it doesn't really matter as AID can generally only be managed -- at least from a conventional standpoint.

    Another thing to point out is the interesting Th1, Th2 inflammation theory (thread on that yesterday here). The gist (I think) is that the various autoimmune diseases we can name are just slightly different organ manifestations of a common dysbiotic process in the gut, that drives various types of cytokine-led inflammatory states.

    This explains why those that suffer from AID tend to have other AID comorbidities, and if CFS/ME is indeed autoimmune, that would tie into the above.

    I don't think there's much to be gained by trying to disentangle cause and effect with your health problems, as you suggest. It's likely to be impossible to know what's CFS, what's hypothyroid, etc. Just focus on doing anything you can think of do make the overall health picture better.
     
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  8. mermaid

    mermaid Senior Member

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    First I want to thank you @ahmo @xchocoholic and @dan062 for replying as I am finding the discussion helpful. It's not an area I have properly explored yet (the autoimmune) whereas I have spent hours and hours on looking at ME/CFS over the past few years. I find science very difficult, so this forum has always been challenging for me, and I have often felt on here that I am fumbling in the dark with any real understanding.

    Sorry not to use the quote thing here, but not quite sure how that works.....

    @ahmo - I am pleased to hear that LDN is helpful for you. I am really sad that I have been unable to use it, having tried twice now - the 2nd time earlier this year I had unusually severe reactions to it, both neurological (I think) and gastric. I was very disappointed and have had to give up on it. People say that side effects are few, but sadly not in my case.
    I wish both you and your husband well with his coming surgery issues.

    @xchocoholic (your name here sounds a bit like the state I am in as an ex-chocoholic!) Thank you for your thoughts.
    My understanding re hypothyroidism and Hashimotos is that hypothyroidism (ie underactive thyroid) is a condition that is principally caused by Hashimotos. That is to say that hypothyroidism isn't exclusively autoimmune but is so in over 90 percent of cases I believe, and Hashimotos is what the autoimmune version of it is called. In the UK where I live the doctors don't tend to call it Hashimotos for some reason, but this is what it is. In fact they don't even tell you that you have an autoimmune condition at all and I found out accidentally some years later via another consultant who was looking at my Lichen Planus.

    @dan062 - yes, I would agree that in the end it's better for me to concentrate on what helps me, but of course the reason I am looking at this stuff in more detail is to see what is out there particularly in Functional Medicine re autoimmune disease, as I haven't really explored this before. For example, one of my worst symptoms - the probably autoimmune gastritis, has been getting worse and more persistent, and so I am looking in more detail (reluctantly as my diet is already very restricted) at what is suggested by some re diet for autoimmune Paleo.

    It is possible that there other things going on in me that are not covered by 'normal' autoimmune conditions and that this bit of my illness is autoimmune ME, if such a thing turns out to be true. I rather fear that I will be too far advanced in age to benefit from any research in this, so I will try to pursue all I can find re autoimmune things and see how much I can heal. Already my immune dysfunction is showing good signs of recovery, so I am hopeful!It's a shame about the LDN but there it is.....
     
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  9. xchocoholic

    xchocoholic Senior Member

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    Mmmmmm. Chocolate ..... :)

    I was dx with Hashimoto's via a thyroid antibody test. Do they run those in the UK ? My thyroid levels aren't off far enough to treat. I'm using the gf and low goitrogen diet as treatment.

    My digestion is always a challenge. Much less now tho since I've learned which digestive enzymes to take for what I'm about to eat. Taking DGL is helping too.

    I still have to avoid gluten, dairy, soy, corn, dyes, etc etc even after 9 1/2 years on a restricted diet. I get my original reactions. And I just gave up eggs and onions again after being able to add these back into my diet for several years. The amount of gas was unbearable. The upside was knowing to look for triggers vs taking a drug or supplement to stop my symptoms.

    I'm into functional medicine too. I tried most supplements for energy, etc starting in 2006 or 7. Some helped at first but then stopped. Now I'm mostly using food for nutrients. Juicing helps me energy wise if I have the energy to juice. Lol.

    Tc .. x
     
    Last edited: Nov 22, 2014
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  10. ahmo

    ahmo Senior Member

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    After listening to several of the recent Autoimmune Summit speakers, and simultaneously reading an article by lowhistaminechef re mast cells and eczema, I am now totally converted to the Gut-Disbyosis-is-primary belief.

    @mermaid, thanks for your well wishes. I realized this morning that the other change in my supps is PQQ, for about a week, which feeds mitochondria. But I'm reasonably certain that this stamina improvement has been going on longer than that. I'm thrilled. It makes the prospect of my need to be out in the world not so filled with dread. sorry it doesn't work for you.:hug:
     
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  11. mermaid

    mermaid Senior Member

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    My thyroid issue (ie hypothyroidism/Hashimotos) was diagnosed nearly 20 years ago now, via the TSH test which mainstream medicine sees as the gold standard (many of us who know more about the thyroid DON'T see it in quite the same light, but that's another story......).

    Apparently it is quite rare now (in both UK and US I have read) for mainstream medicine to bother to check the antibodies - they prefer you to get as ill as possible before they get started and in the UK they even like the TSH to reach as high as 10 (high is bad, low is good), whereas in the US you only have to reach 5 apparently. I was luckier as it was sooo long ago that they were a bit more flexible then and my TSH didn't go very high - I was only borderline when they began to treat with Thyroxine.

    So glad to hear that you are able to treat hopefully in the early stages, so may be able to reverse things before they get too bad. I wish I could turn the clock back and do the same, but 20 yrs ago I did not have the resources of the internet to know these things I know now.

    Interesting to hear of all your restrictions too which you have followed a long time. I have been doing Paleo now for around 5 years, though was not ultra strict until recently, other than with gluten which has been out for several years. I have worked extensively on my gut over this time - having a number of tests which didn't show too much awry (possible mild dysbiosis was the worst shown up). I have used probiotics and/or kefir, plus a whole range of other supplements including digestive enzymes, and HCL Betaine with Pepsin, - I take around 17 supplements in all I think, many of which were recommended to me after having various tests done last year.

    I am resigned to the food restrictions for life now but I am trying to work out the finer points as the gastritis/food intolerance has got worse in the last year or so which worries me somewhat (at my age I have to prepared for something more sinister, though I don't think it's that).
     
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  12. mermaid

    mermaid Senior Member

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    Yes, I too am sold on the gut dybiosis being really key, though so far investigations I have had done have not revealed anything really serious there - and I have been working on it so long that I am surprised really that the gastritis has got worse.

    I can only assume that I have carried on eating something that has been affecting me autoimmune wise more than I realised, so I am on the quest now to reduce triggers as much as I can.

    I had not heard of PQQ - thought I had heard of most supplements by now! I just googled it and it looks interesting. It's not horrendously expensive too. Definitely I have mitochondrial issues as I have had Dr Myhill's test done twice, and even though I did improve over 4 yrs, I am in decline anyway at the age of 62 so these could be useful to me.

    I use many supplements,(many are for the stomach/gut) including CoQ10, but I can see PQQ are one step forward. Thank you and so glad to hear that things are improving for you. Actually they are for me too as my immune system generally is better, but the gastritis issue is concerning me the most as that's the area that has got worse recently.
     
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  13. xchocoholic

    xchocoholic Senior Member

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    Hi @mermaid

    I'm 59 and I just gave up gluten, etc at 50 so I'm a goner too. Lol. Seriously I'm much better off than I was at 49 but my list of diagnosises now is 2 pages. Most proven via labs, mris and cat scans.

    Hope you get your digestion under control. Fwiw the last time mine tanked it was from h pylori.

    Tc .. x
     
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  14. mermaid

    mermaid Senior Member

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    Goodness I just looked at the list after your post of your history, xchocoholic (sorry just edited this and tried to tag but wouldn't let me...). Looks pretty grim. Maybe mine is too but I am in blissful ignorance as our health service does its best to ignore chronic health issues unless it's diabetes which of course Big Pharma makes plenty out of. Thankfully I have avoided that, and my diet and lost weight should protect me.

    So I have had few tests like the ones you list (ie mris/cat scans) - only labs, and mostly those done privately. However I am not too bad really apart from the stomach, so I can't complain. The self treatment has done a lot to improve things I think.

    I have been checked a couple of times for H Pylori - first time 10 yrs ago when having an endoscopy, and a blood test done about a year ago to recheck due to the continuing gut issues. That's why I think it's autoimmune.... thanks anyway, I think it will improve if I take it more seriously (ie avoid cake and chocolate at all costs for a start!!).
     
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  15. xchocoholic

    xchocoholic Senior Member

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    Avoid cake sure but chocolate ? No way. :)

    You may luck out and feel better just by eliminating cake or grains. Fwiw, I'm ok with Rudi's bread once a day or every 2-3 days but that's all. Two slices in 1 day nails me. I react to most of the others I tried that didn't contain my allergens.

    Fwiw, I'm sure you know this but you can get h pylori anytime. Pepto bismol can be used to treat h pylori. But my dr insisted I needed serious antibiotics because mine was out of control. My worst symptom was stomach pain in the middle of the night. Eating citrus hurt too tho. I didn't know these were common symptoms.

    Only Enzymedica brand digestive enzymes work for me. I need several per meal. Always more than the recommended dose. I like Spectrum ( contains xylanase), Digest Basic, Glutenease and Bean Assist.

    Enzymedica's Bean Assist has been helpful for my gastritis. It's good for more than beans. I typically need 2.

    Oh and I just successfully treated for a uti that was aggravating my stomach too. Maybe I had e coli in my gut too ? I used Vibrant Health uti formula.

    I noticed you're taking 17 supplements a day too. I've found that I had to stop most of my supplements after awhile due to various adverse reactions.

    I try NOT to look at my medical records. My body hates me. Lol.

    Hope you find something that helps. Tc ... x
     
    Last edited: Nov 22, 2014
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  16. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    I think you are on the right track @mermaid. I am personally pretty sure that the autoantibodies in Hashimoto's disease can make you feel terrible through a mechanism that has nothing to do with thyroxine or even the thyroid. In Grave's disease the antibodies can make your fingers and shins swell up and your eyes pop out. I see no reason why antithyroglobulin antibodies should not do strange things too. The problem is that the establishment physicians just don't think a bout this and I think the alternative hormone physicians have missed the point too because they think it is all a matter of fine tuning thyroid hormones. Whether or not you need to tune these my own experience with what patients say suggests that there is another mechanism nobody has even thought about yet.

    I suspect having Hshimoto's is quite enough to give symptoms that would satisfy ME criteria. Whether you want to call it one of the types of ME (I think I called it ME1 in a thread a while ago) I think probably does not matter much.
     
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  17. daisybell

    daisybell Senior Member

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    I am very interested in this, as I have Graves and ME. Currently, my Graves is flaring up again and I have just started treatment at a very low dose. I don't know enough about it to know if my antibodies are increased when my TSH drops or if the antibodies are relatively stable....
    However, I started LDN two months ago and have improved dramatically... How could that fit with the issue being just one of thyroid antibodies?
     
  18. SOC

    SOC

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    Does Hashimoto's have PEM/PENE or otherwise meet the ICC or CCC? Or are we talking about other ME criteria?
     
  19. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The point is that in Graves' disease the antibodies are not just against thyroid proteins, or at least they can produce effects on completely different parts of the body. And it also important to remember that 'antibodies to X' (e.g. X is thyroid peroxidase) are not all the same. A person with antibodies to X is likely to have at least a hundred different antibody species all binding to X from different angles. If any of these bind to something else as well then you may get all sorts of strange symptoms. Back in the 1960s people talked of 'exophthalmos producing factor' because some patients had continuing eye problems despite the thyroid being OK. It seems that a proportion of antibodies in Graves' disease bind to some receptor in fatty tissue around the eye. If they can do that I see no reason why they should not make you feel ill in all sorts of ways.

    I keep hearing about people getting relief from naltrexone and I find this particularly interesting. If I remember rightly it binds to endorphine receptors, which also bind things like gamma interferon, so there may be cross-talk with immune signals. LDN sounds to me like maybe the most interesting avenue for drug research in ME.
     
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  20. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    That I would not know. I was talking more generally and I think mermaid suggested that PEM and non-refreshing sleep might not be specific features.
     

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