arrow27 Comments
  1. Victoria
    Sep 01 - 3:53 pm

    I was originally diagnosed with CEBV at age 34 but had my first initial outbreak at age 27after my son was born the year before. Now, at age 61, I have HBP which started at age 34, bladder problems, Osteoarthritis, Osteopenia, Neuropathy and have had multiple broken bones. I’m on Coumadin therapy. Reumatoid Arthritis is in the family background and so are heart problems and Neuropathy. I too went online for help. When I read a book on the subject of CFS at about age 36, I started taking it’s doctoral advice of supplements and in time these helped. I had a job that I pushed myself to do with pain killers and much caffeine. It was far more physical than mental in order to do. After several yrs of taking extra magnesium with my supplements, my headaches stopped. If I miss it a couple days in a row, they come back. At this point my energy level is so low and walking any distance or length of time is a big problem. I also get freezing cold very easily. I have a high tolerance to pain which has served me well. I’m presently taking Neurontin for the nerve pain. I’m retiring next year at age 62. Just can’t fight it any more.
    Of course, there are the multiple allergies. I have to stay in during the tree pollen and this year due to the ragweed. I’m having symptoms akin to Fibromyalgia now. I believe that ME/CFS and Fibromyalgia are the same ailment. It just takes a bit of a different form per person.
    The drugs that would significantly help my daily pain cause CA and who wants that? So I endure each day. No one really understands how we feel but those of us that have it.

    • Lesley
      Sep 05 - 6:54 am

      I took the strongest prescription anti-histamines available for 35 yrs due to allergies and always had a box of Kleenex near by. I had polyp surgery and part of the after care was to rinse the sinuses 6 times a day with a saline solution. I have continued using the saline rinse every morning in the shower and am no longer taking any anti-histamines, nor due I get sinus infections anymore. So many allergens and germs enter the body through the nose that I now rinse after coming into contact with anyone who has a cold/flu. I like “Simply Saline” because it has a longer nozzle.

  2. Issie
    Sep 01 - 10:26 pm

    I believe it —–DIET is going to be a key to helping our issues. It can address autoimmune issues and if we do research and figure out where some of our genetic mutations are —-we can use it to address those. That helps our body to function even better and we may can work around some things that have been “turned on” that we’d rather have “turned off”.

    It’s working for me. I’m not well, but so much better.

    Issie

  3. Bonnie
    Sep 01 - 10:44 pm

    I love your line about impersonating yourself.

    I just yesterday found out that my aunt died of something that sounds a whole lot like CFIDS. First time I have a family connection you mentioned your aunts. I am curious on your mothers side? Does anyone else have this type of link?

    Bonnie

    • Cort Johnson
      Sep 02 - 9:12 am

      Thanks, Bonnie – I have to give credit to Meghan for that line (and all the quotes). My mother died of complications of Sjogrens Syndrome and she had a nephew or cousin with chemical sensitivities decades ago….That’s about it for my family.

  4. lisa
    Sep 02 - 3:27 am

    I have had CFS since 1997, with a significant downturn around 2007. Diet has been huge to help control symptoms as I too eat no sugar, no dairy and little wheat. For several years I was completely gluten free but I went back to eating wheat once I figured out everything I was eating that bothered me was made from a flour that had wheat and barley in it…..Barley is baaad….for me anyway.

    I still have to limit wheat as it seems to feed gut pathogens, and
    I am considering another completely gluten free stint to see how this affects my health as I have recently done some reading on
    how autoimmune diseases are triggered by gluten sensitivities and how thyroid autoimmune illnesses can be controlled by removing gluten. So far I dont have these thyroid antibodies, but
    I dont want them either. The article I read was specifically for Hashimotos thyroditis but at this point, I figure whats good for one autimmune illness may just well be good for the others.

    this effect

  5. Celeste Cooper
    Sep 02 - 9:23 am

    Oh how I wish there was such a specialty as thyroidologist. Endocrinologists don’t get excited about Hashimoto’s (autoimmune thyroiditis). What they don’t understand is that in FM and ME/CFS normal and abnormal labs mean little when it comes to thyroid function. Then there is the late Dr. Rowe’s research on thyroid resistance, which few consider.

    In my own case, I waxed and waned from hyper to hypothyroid symptoms for years, bedridden and unable to talk or walk or bulging eye, clawing fingernails, and climbing the walls, while suffering from sleep deprivation psychosis. Unfortunately, even with thyroid supplement, I still do though not as severe. The true test for thyroid function is the iodine uptake and nuclear scan. It is not uncommon at all for autoimmune disorders to cluster together, but here again, endocrinologists seem disinterested in exploring other considerations even though they will give you handouts making these suggestions. Hypothyroidism is LIFE ALTERING, and even worse is autoimmune thyroiditis. It is unpredictable, something those of us with FM and ME/CFS know only too well.

    Leaky gut syndrome has been identified in many autoimmune disorders, therefore diet is a huge consideration. Another thing we don’t hear from our doctor is that soy can interfere with thyroid supplements or that levothyroxin is not the be all and end all to treating hypothyroidism.

    I discussed my concerns with one of the authors of the new diagnostics for FM and got no where. There have been a couple of studies linking Hashi to FM, but follow up studies are needed. Even when the thyroid hasn’t burned itself out to the point of requiring supplementation, it continues to have surges of thyroid hormone release, and then it will suddenly and completely shut down without notice. This means the symptoms take drastic turns on a dime. In my opinion, any patient who has such symptoms, a routine thyroid panel is not sufficient. These patients need scans and antibody tests done. At least then we know we are NOT out of our mind.

    Great share.

    • MK Gilbert
      Sep 02 - 10:33 am

      I’ve had sensitivities since infancy, (stomach, skin and had Pink Disease (mercury poisoning) and had neurotransmitter deficiencies since then, as well, I believe. (had seasonal depression even as a child growing up in the sub-tropics plus night terrors and sleep-walking/talking.) I have never been a high energy person, but was active in sports in HS. Always needed more sleep that average. Have had symptoms of hypoglycemia since teen years, diagnosed by a nutri/chiro in my 20’s~so glad they don’t do those awful 6-hr glucose tolerance tests much anymore!!! He said back then that it was an adrenal problem. I was having nagging back-aches which he said were the adrenals.

      Now that I’m in my last 50’s the fatigue is so bad I can’t even do anything physical for an hour without being totally exhausted! Have had chronic fatigue for 26 yrs with the aches/pains of “fibromyalgia” coming on more gradually. The onset of the severe fatigue was right after a major move out East away from everyone we knew and accompanied by a severe yeast infection with swollen, painful Bartholen’s gland. I had it cleared up myself before I could get into the OB/gyn MD the sent me to. Got pregnant the next month (I was doing my student teaching and dreaded getting up most mornings.)

      After our 2nd son was born the next summer I thot I must be dying, as I was so tired. Our 3 yr-old wouldn’t nap, and required constant supervision~turns out he has Asperger’s which I didn’t figure out ’til a few yrs ago! (He is brilliant, but suffers from severe anxiety/depression which is crippling him~I think my father-in-law may have had it too, altho he was a successful U prof he had major issues including alcohol and drug abuse, dying of CHF at age 72.) I have a brother with Tourette’s and a sister who had a complete mental breakdown in her 20’s after having 4 babies in quick succession. She was hospitalized for 3 months, and so drugged up that I was afraid to go for med help until after our 4th son when I was near 40, as the depression, fatigue and having one infection after another got so bad.

      That’s when I started on thyroid med (which hasn’t touched the fatigue or depression in all these yrs) and anti-depressants~which worked wonderfully for the depression at 1st, but I’ve had to switch meds many times and the few they tried last yr all failed. I still take Synthroid, but my new nutritionist, whom I found online a couple wks ago says I need to switch to a natural form, so I have to find a holistic MD to prescribe that. I also still take Cymbalta, which I can’t do without, altho I cut down from 90- to 60 mg this summer. They had me up to 120 6 yrs ago, but that made me too agitated. At 60 mg the heart palpitations, elevated BP and pulse went down, but now that fall is coming I may have to up it again.

      I’m absolutely dreading another SD winter, as I barely made it thru the last one which was a long one with a blizzard in March during which I made my 1st feeble suicide attempt. That made me angry, as I wasn’t able to go thru with it, but also scared me, as I never thot I’d ever be able to do that to my family~I don’t want to cause any pain or mess for them. I dragged myself thru the summer, with a bad cold early on, and it felt like maybe I’d gotten the West Nile last month, as I was more exhausted than ever. The nutritionist, who is giving me loads of advise for a donation, as we have no insurance, is a major answer to prayer!!!

      We’re starting out working on my digestion, and after only a couple weeks of going-grain free I feel a little better~at least I’m not hungry all the time, the cravings are disappearing, as has a lot of the bloating/gassiness. I feel a little nausea as soon as I eat something I shouldn’t ! I also avoid dairy, except for yogurt and hard cheese. I do eat some rice and oats are ok for me. Sweet potatoes are the best kind. I know I need to have a whey protien shake (I make it with yogurt, freshly ground flax seed and fruit), daily.

      There are many other things the nutritionist wants me to do, but it will take time to afford them all. He recommends sleeping on a grounding sheet, getting a dental appliance for sleep apnea (I couldn’t sleep well at all with a CPAP!), drinking purified water (we use filtered), getting an air purifier for the mold allergies, and taking higher, better quality supplements. He told me about some mitochondrial supps that should help. He’s helping me save $ as he’s not doing this for profit, and I can buy some of my supps from him at a reduced cost.

      He also tells me which brands I get online are good quality. So, I have hope for the future now, where I’d practically given up. I’m trusting that my body and mind will heal as I nurture it. Exercize is also important, of course. I love to swim and ride bike, but have to take it slow. I may start going to a yoga and/or ti-chi class at the local U which I live near.

      I’m continuing my ed~will have my ESL endorsement added onto my teaching certificate after one more semester, so I can teach English as a 2nd language. Can’t work much now, but have substitute taught most yrs since our youngest was in K~he’s getting married next year, as is our 3rd son~now if we can just get our eldest (the one with Asperger’s) settled, I’ll feel my life’s work is complete! He is still totally dependant on us and gets no benefits except food stamps (when he keeps up on the requirements!)

      I hooked him up with VocRehab a few yrs ago but still no job. He was only a few credits away from having enuf to graduate when he quit college completely a few yrs ago…has defaulted on his loans, so refuses to consider finishing a degree at this point. I wish we could find the help he needs!!! He takes a couple meds, but still just holes up on his computer, rarely leaving his apt next to ours…He says he’s going to apply for a job he can do from home (on-line tech support) so praying that will work out. At least he can have financial independence, then. We want him to have as much control over his own affairs as possible. Well, this is turning out to be a book! Sorry it’s so long, but that’s most of my story…

      • Cort Johnson
        Sep 02 - 11:13 am

        What a story MIK! Thanks for sharing.

        I wish you the best of luck with the winter and with your new diet and your nutritionist, and, of course, with your son. I guess you do the best you can and let him make his choices; he will certainly make them anyway.

        I want to acknowledge you for keeping on with your ESL certificate in the midst of all this. Good luck!

      • Pamela Frothingham
        Sep 21 - 2:14 pm

        The first and most important thing to know about curing all these illnesses is that allopathic medicine cannot help you. Read Accidental Cure by Dr. Simon Yu.

    • Marilyn
      Sep 05 - 11:15 am

      Oh how this rings a bell..so loudly! I am going through the same stuff . I am a research nurse (now on SSDI for the last 13 yrs) and I did all the reading my “Dr’s” probably never did. Why must all manufacturers use Gluten or nuts or anything highly allergic??? True some people never become allergic, but if it is a known ….why use it in products(besides the reason of income it will provide.. if its harmful? )

      it all comes down to the mighty GREEN..sadly!

      My question…why don’t Drs address/treat our Adrenal function in conjunction with other hormone levels ,,they are an organ just like the other organs in our body!!?? iIf you mention Adrenals.they sigh…sad!

      • Lila
        Nov 16 - 6:51 pm

        I’d like to know why they don’t check the function of the ENTIRE endocrine system. There are many glands that are part of that system and all the endos seem to care about is a TSH level. I have to tell them, check my T3,4 and my TPOAb’s. We need to see where they are too. Because I swing back and forth and had really high TPOAb’s. No one has ever checked pituitary, thalamus, hypothalamus, and the rest of it. How do they expect to make a proper diagnosis without the whole picture. They make me want to scream. Most endos know diabetes and know very little about the suffering of thyroid disease patients. It ruined my life and my body….!

  6. […] What’s Wrong With ME? […]

  7. Sarah Robinson
    Sep 02 - 10:37 am

    Thanks for bringing this article to our attention, Cort. I too especially appreciate the line about feeling like you’re impersonating yourself. By now, 10 years in, I’ve given up the impersonation and I’m just a different person altogether. I wonder who that other person was and how she did what she did. I get in big trouble when I expect myself to be her or to do the things she could do. Makes me truly crazy.

    I’ve been off of sugar and wheat products for about 15 years, and I know I feel better now than I would if I was still eating those. (I know because occasionally I “fall off the wagon,” and I pay for it dearly.) I can be our of bed for 2 hours a day, and mostly I don’t feel too miserable if I rest and accept… everything, as it is.

    I got really serious about ferreting out gluten in all of its ubiquitous forms in the second year of my symptoms. I found it in bouillon cubes, salad dressing, nearly any packaged food mix like boxed rice dishes, etc. After only two or three days, my symptoms disappeared–all of them! I was ecstatic. The curious thing was that after three months of this, my symptoms returned. I hadn’t changed my diet, but the symptoms mysteriously reinstated themselves. I was mightily disheartened.

    I’m still not eating sugar and wheat products. And I cling to my mantra, “Rest and accept.” It’s all I know to do at this point.

    Thanks again for all of your work bringing research and articles to our attention. And a BIG THANK YOU for such an easy-to-read format and website!

    • Cort Johnson
      Sep 02 - 11:04 am

      Thanks, Sarah….

      Niki Gratrix will surely have something to say about that initial boost after getting rid of gluten which disappeared. I wonder if the same thing happened with me with my macrobiotic diet. I thought I had kicked ME/CFS for awhile but then I started losing weight and had to go off it. I never connected the macro diet with gluten avoidance, though…

      I’m on week two of no gluten. So far I’m doing pretty good.

      • Issie
        Sep 02 - 2:26 pm

        Yayyy Cort,

        Glad you are sticking with it. Next to go will be dairy. And, (you’re not going to like this) Soy. Soy is a big problem for many. It can also imbalance hormones. Especially, not so good for men. Soy and flax work like estrogen.

        People check your supplements. There are lots of things that could cause an issue there. There may be some fillers or dyes causing issues. If you’re doing probiotics, make sure they are dairy free. Only exception I make to that is my use of colostrum. I don’t find that it causes me a problem – despite it being a dairy source. And the benefits, I feel outweigh it.

        Issie

        • Cort Johnson
          Sep 02 - 2:40 pm

          Dairy’s been history for a couple of years but soy….you’re right I don’t like that…but I get it; soy can knock me out…particularly when I was worse off – it would quickly drain me…There’s always be something with soy…

          Then, again I don’t do so well with almond milk either…(sigh)

          • Issie
            Sep 02 - 10:36 pm

            Coconut milk is good. I like the SoSo brand – of course Trader Joe’s brand is good too. I have to plan for it – as it’s high in fat. But, I will have it with my cereal in the am sometimes.

            Soy . . . .not at all good for me.

            Issie

            • Issie
              Sep 02 - 11:56 pm

              Oh, I’m not good with almond milk either. I have a reaction to anything in the Rose family and that includes almonds. But, I still do some of those in that family – and take allergy meds. How silly is that? LOL! We do it to ourselves.

              Issie

  8. Kikki
    Sep 02 - 8:03 pm

    I was unable to access the article referred to, but my sister read it and said, “now I have a better idea of what you’re going through.” I had CFS from ’96 to around 2003. That was the last relapse. I returned to normal functioning; working full time, having a relationship, remodeling a house, traveling. Then in mid-2010 I got sick again. I thought I was relapsing with the CFS, since the fatigue felt familiar. But it wasn’t. I was diagnosed with hypothyroidism at the end of 2011. I eventually went on natural thyroid replacement and my levels normalized. But I continued to get sicker. I got a tachycardia. I was having shortness of breath. I eventually got shingles, headaches, neuropathy in my left arm. The neurologist ran the auto-immune tests, and I tested positive. Since then, even under care of a rheumatologist, I’ve gotten sicker. Anemia, lung involvement, activated immune system tests, etc. I’ve been on strong immune-suppressants, including chemo-therapy. I am still not well. I’ve cut out soy, any GMO food, most but not all sugar, sleep 8 hours a night. My diagnosis? Undifferentiated Connective Tissue Disease.

    I don’t know if there’s any connection to the CFS I had and what I have now. The illness is definitely different. With CFS I was less functional (although hard to believe some days), felt sicker most of the time, but had negative test results for everything. My doctor has still referred me to Dr. Chia for an evaluation. He thinks there’s a connection. I’m not so sure.

    Her story is the first I’ve heard that resembles mine in any way. If there are others, I’d sure like to hear from you and compare notes. My saga continues.

    • Cort Johnson
      Sep 03 - 11:14 am

      What a story Kikki. Have you read Lauren’s story in this blog? I wish I had an answer but I encourage you to stick with Health Rising…We’ll be looking more into the cracks between these different disorders an uncovering diagnoses that you might not have thought of.

      • Tamra
        Dec 24 - 11:15 pm

        Kiki, are you on T4-only thyroid meds, or desiccated thyroid?

    • Issie
      Sep 03 - 4:04 pm

      Kikki, This sounds very familiar to me in the POTS world. Have you been evaluated for POTS? Many of us have also found that we have EDS III, which is the only type that cannot be tested for with genetics. There are also many of us with autoimmune disorders. The symptoms you are talking about are very common with MCAS (mast cell activation syndrome). For some reason these three things go together and we have this trilogy going on with us. Even the breathing disorders can be explained by this.

      I know that when you are not sure what you are dealing with it is very scary and you are not sure what to do next. But, this is very common in the circles that I run in. I have many of the things you are speaking of.

      You didn’t say what your immune system was doing, exactly? But, I have lots of issues in that department too. I have tested positive with my dsDNA test (which indicates Lupus – not testing positive at this time) and also have alopecia and vitiligo and have spondylitis. Some have used chemo as a treatment and it seems to help some. Some of us have used steroids and some of us are using long term low dose antibiotics. Most of us are on supplemental alternative treatments. The odd thing with this is despite our immune system attacking us, some of us have very low IGG levels indicating low immunity. I also have hypogammaglobulinemia.

      Hang In There, Darlin! You’re not alone in this journey. There are others of us in the boat with you.

      Issie

  9. Patty Butts, Ph.D.
    Sep 03 - 4:47 pm

    My journey through chronic fatigue and fibromyalgia lasted five years. After feeling like I had the drop-dead flu almost every day my doctor put me on diflucan. Diflucan isn’t the answer for everyone, but I had candida–the result of antibiotics. It was the first step in my recovery. An alkaline diet was the next step. Since then I have completed my doctoral dissertation in Holistic Nutrition and have more energy than when I was 30.
    If I had chronic fatigue again I would take Neem pills, coconut oil and do “The Emotion Code,” which releases trapped emotions that contribute to ill health.
    My passion is to help others recover.

    • G Michaelmas
      Sep 03 - 10:53 pm

      Hi Patty, thanks for your post. How does a person go about finding if yeast is causing problems for them? Is this what you would recommend the coconut oil and neem for? Thanks

  10. Issie
    Sep 03 - 7:07 pm

    Patty,

    Thanks for your comments. I do think yeast may be playing a role with many. You reminded me of caprylic acid – which comes from coconut. Since, I’m on a low-fat vegan diet – than oil isn’t an option for me. But, caprylic acid is. I’ve not tried neem. Interestingly enough, I’m too alkaline. I think a lot of people that are meat eaters do however have problems with acid and of course a lot of things survive and thrive in an acidic environment.

    The approach that I’m using addresses not only yeast, but bacteria and protozoa. (I feel that I keep repeating myself on these threads. But, it seems to fit.) Those type of things can live in a bio-film and evade the immune system from detecting them. We need to break down that bio-film so that not only the immune system can detect them, but any supplements we are taking can be effective. There are several enzymes that can do this —-natto, serrapeptase and lumbrokinase. I use those several hours before taking what can go in and control/eliminate these pathogens. Then later after that, I use probiotics to rebuild good bacteria and repopulate the good and suppress the bad. I’ve also found that colostrum is good to use and helps with balancing many things in the system and helps with the immune system.

    Issie

  11. Tamra
    Dec 24 - 3:56 pm

    I was dx with fibromyalgia in 2008, told my swollen thyroid was normal because my labs were “fine”. Yes, you can have horrible Hashimoto’s symptoms and have a TPO of 28. My hair fell out, skin was like a lizard, weighed 100 lbs at 5’6″, couldn’t sleep, depressed and had daily panic attacks, IBS, the whole list of thyroid symptoms, but the worst was the horrible body pain. Couldn’t find a doctor who would agree to Rx thyroid meds. They kept telling me it was fibromyalgia! Fibromyass!!! Finally found a good doctor and got dx as hypo with Hashimoto’s in 2010, but by that time it had turned into thyroid cancer. :( If they’d given me NDT when I first got sick I wouldn’t have gotten cancer!!! Stupid doctors!!! Then the surgeon and endos insisted I go on T4-only, telling me NDT wasn’t good, was unreliable. T4-only kept me in the same horrible pain. Finally got on NDT in Jan 2012 and am getting my life back. No more pain or other symptoms. Again I say, fibromyass! Hashimoto’s sucks, but at least I have online support. Lord knows, doctors never helped.

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