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A LOT of totally incorrect/wrong information and advice given

Discussion in 'General ME/CFS Discussion' started by leokitten, Oct 18, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    Wow! I've seen 3 different ME/CFS specialists in the 9+ years I've been ill, to say nothing of several different PCPs, a cardiologist, and a pulmonologist and I still haven't had all those tests. :)
  2. Wayne

    Wayne Senior Member

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    Just a quick note regarding your parasite tests. I read an interesting article recently entitled, Worms and Parasites (on a website selling diatomaceous earth). I found the following pretty interesting, and perhaps something to consider. Also, there's a thread on this forum about a woman who discovered she had a tapeworm. Not sure if she had tested negative for this, but my understanding is that many people who test negative for tapeworms ended up discovering they had one.
    ........................................................................................

    "Realize that although you may not feel ill or tired, there may still be parasites within your system. Parasitic infections are masters at hiding while feeding off the human body. So, how can you tell? You can try to take a medical test, but as Dr Andersen (a leading authority on parasitic infections) has said: If you were tested by a doctor for parasites, chances are the results would come back negative. Does this mean you do not have parasites? Unfortunately, medical testing procedures only catch about 20% of the actual cases of parasites. Over a 1,000 species of parasites can live in your body and tests are available for approximately 40 to 50 types. This means, doctors are only testing for about 5% of the parasites and missing 80% of those. This brings the clinically found parasites down to 1%. Now, if I had a 1% chance of winning in the stock market, I don’t think I would invest. Only 1% of parasites are ever clinically found.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Similar to what im doing although doses are different.
    I use to use nystatin but now use sacchromyce bouldarri which can also help reduce an inflammation in the gut. Instead of hydrocort i use pregnenolone. If dhea is low its worth supplementing with as it can help lower tnf and other inflammatory cytokines??
    Have u seen increases in nk numbers and function with immunovir?
    My thyroid as always tested normal but body temps have always been very low ie low 35s, the preg and dhea have helped abit, a short trial of t3 didnt help and increased fatigue probably due to adrenal fatigue/dysfunction, but since i have sorted my testosterone levels out my body temps have been normal 36.8c.
    Thanks for posting your treatment, interesting.

    cheers!!
    leokitten likes this.
  4. aimossy

    aimossy Senior Member

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    hi leokitten, just wondering if you had read the articles and threads on Lipkins research and Jonathan Edwards thread etc. you may have already. Good list of tests!
    leokitten and rosie26 like this.
  5. Soundthealarm21

    Soundthealarm21 Senior Member

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    Where can I find that?
  6. aimossy

    aimossy Senior Member

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    you can scan all the home page phoenix articles and find stuff in there and do a search on threads in the search box, can type in lipkin for example and rituximab jonathan Edwards. this brought the threads up for me im no pro though.:)
  7. Sushi

    Sushi Moderator and Senior Member Albuquerque

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  8. catly

    catly Senior Member

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    leokitten
    Thank you for the list.

    Ema,
    Thank you for your additions

    While I've had a lot of those tests (mostly by my CFS md), there are still some that I'm missing. Between my CFS MD and new Integrative Medicine group, hopefully I can check off the rest while I'm in the fairly early stages of this disorder. Plus I did just send in my 23 and me sample.
  9. catly

    catly Senior Member

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    I've often wonder the same. In my case, I had a fairly rapid progression to hypothyroidism---or at least my endo thought it was unusual for someone's TSH to go from 1.65 to 4.92 in a year, even with Hashimotos, which I also have--who knows when that started. And to add to the thyroid issues as part of my CFS workup they did a thyroid ultra sound and found a nodule which turned out to be cancer.

    I also had a low positive ANA shortly after onset of initial symptoms in May of 2012, which reverted to non-detectable in June 2012, then went up to 1:320 when I crashed in May 2013. At the same time I was found to have HHV-6 antibodies (1:1280) and EBV.as well as low NK function (6).
    Also been through the loss of appetite, nausea with weight loss a couple of times. Haven't had much in the way of cortisol or glucose testing through--just routine serum tests.
  10. leokitten

    leokitten Senior Member

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    To both @Ema and @Sushi I just read about the Marshall protocol for the first time. Is this considered quackery or only useful for people with Vitamin D receptor dysregulation?

    As you saw I have low vitamin D and have been supplementing every day. Actually one of the very early warning signs I had years ago when my first gradual symptoms started appearing and I went to the doctor for a checkup was very low 25-OH vitamin D levels.

    Since I fell ill in January this year I've had my 25-OH vitamin D tested multiple times and I even experimented once to see what would happen if I didn't supplement, it tanks if I don't take a supplement.

    So I read intently to what you both wrote and went last week to get tested for both 25-hydroxy and 1,25-dihydroxy and should know this coming week.
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Well, we are getting into opinion, but I think many here would agree that the Marshall Protocol isn't the answer and has been outdated (sorry to those who disagree!) o_O.

    I have lousy Vit D receptors but personally wouldn't try the Marshall Protocol (check his credentials). I think the Marshall Protocol may point to other things that need attention though.

    Sushi
  12. anne_likes_red

    anne_likes_red Senior Member

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    @heapsreal - excellent about the normalised temp and testosterone!!! :thumbsup:
    heapsreal likes this.
  13. valentinelynx

    valentinelynx Senior Member

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    Yeah, wish I tried it. Instead, I went to medical school! I was in the process of applying when I got sick, and engaged in full denial until hitting a wall during clinical rotations. Had I gone to bed for 6 months back in 1993, would I be well today? Gotten IVIG? Or, maybe, had I gotten antibiotic treatment for my tick bites in 1993? 20 years later is it all too late?
    Tristen and SOC like this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hind sight would be great, we have to make the best of the situation we are in.
    Hard not to dwell on the past but sometimes i just think only if.o_O
  15. beaker

    beaker CFS/ME 1986

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    This is known as ART ( Aggressive Rest Therapy ) and was promoted back in the 80s.

    Also to note regarding recovery. Bell did a follow up study of the kids in the Lyndonville outbreak. Most of them claimed to be well and "recovered" . After further evaluation, it was discovered that they had adapted and their "normal" had changed. They were still sick. Certainly their functional capabilities of these patients had improved, but they were not really well or recovered.
    Sorry I don't have a link to the paper.
    NK17, Sing and GracieJ like this.
  16. Sing

    Sing Senior Member

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    Yes, and having doctors who can read and interpret the tests in a way which is relevant for us. For example, in a recent video talk by Dr. Alan Pocinki, he said he had had Sleep Specialists interpret Sleep Studies of ME/CFS patients as normal because, or when, they did not show sleep apnea or restless leg syndrome--the two main things
    they look for. Yet there were gross signs of a lack of deep sleep, a normal sleep rhythm, and multiple arousals and awakenings during the night. Luckily this patient had Dr. Pocinki, who got the data himself and interpreted it, but most of us do not have an ME/CFS specialist to order tests and see that they are examined and interpreted in the ways which are appropriate for us.

    This type of thing has made me despair. It is so hard to have to push for everything, and even then not be able to succeed because none of the doctors involved know enough about ME/CFS, if anything, to have a context for helpful diagnosis of even partial aspects of it, and treatment thereof.
    NK17, catly, ukxmrv and 2 others like this.
  17. Sing

    Sing Senior Member

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    Another cause of mouth sores can be a common ingredient in regular toothpaste, called, sodium lauryl sulfate. Use another health food store type without this and see if your sores diminish.
  18. Sing

    Sing Senior Member

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    Unfortunately there are a lot of tests which either haven't been invented yet, or if they have, are only in research use, or another rare category. Our illness is a different sort of creature, in a lot of ways. Witness how long it has taken to get a two-day exercise test for PEM--and how unavailable this is still, and still how avoided in research. Dr. Unger at the CDC thought it was too complicated or something, so didn't include it in their big study.

    Another example is that of low circulating cortisol. Most cortisol testing is done for the purpose of assessing whether the adrenal gland itself is diseased or non-functional, and not for whether the HPA axis is working to stimulate the adrenal gland at appropriate times and levels. The standard quick blood test first thing in the morning may very well not show the kind of problem a lot of us have, in which there is nothing wrong with the gland itself, but rather with the lack of appropriate signalling from the hypothalmus and pituitary glands, as the day goes on.

    Same problem with Sleep Studies which are aimed to pick up sleep apnea and restless leg syndrome, but which might ignore a lack of deep sleep, multiple arousals and an abnormal sleep rhythm.

    The logic behind the problem with testing is as simple as this: If my right leg is broken and you only test the left leg, and then tell me I am fine, have you proven that I am fine?
    NK17, peggy-sue, Ruthie24 and 2 others like this.
  19. Snowdrop

    Snowdrop Senior Member

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    Oh god! On the subject of testing ~ I should be a glow stick. I've been sick for so long, in the early days I'd go to a Dr in the belief that when you're physically ill this is a good idea. How wrong I was. It took me a long time to get over that belief. The road from young and naïve to old(er) and cynical.

    And it's not even necessarily true that my Xray/CAT scan/MRI etc results are negative. I recently read a study inspired by the famous one with the gorilla in the basketball court. People who were the most eminent experts in the field of diagnosing tiny lesions on a scan were given scans to look at with the purpose of finding such lesions.
    They were very good. Only thing is, they missed the impression of a gorilla that was placed on the scan (about 80% missed I think). It's not what they were looking for.

    Have you got sleep issues? Dr.'s are more than happy to recommend a sleep study. But they don't define what the technician looks for. They will always find the case of sleep apnea (I'm betting spouses can be as accurate when available). But we and our symptoms are not on their radar.

    There's so much more I could say but I'm not doing so well at the moment.
    NK17, Sing and SOC like this.
  20. Wayne

    Wayne Senior Member

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    I ran across a reference recently to the "information age" we live in. The author suggested it might be more accurate to say we live in the "disinformation age". --- So true.

    I also ran across an article on the dangers of chlorella for some people (apparently about 1/3 of people react very badly to it, Athene started a thread on this here on PR). --- She ended her article with this:

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