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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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I beg someone to help me

Discussion in 'General Symptoms' started by davidfibdou, Aug 9, 2013.

  1. mellster

    mellster Marco

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    "In a nutshell it showed that half my immune system was dormant (the part that kills viruses) which is Th-1, my Th-2 part of my immune system which kills bacteria is going 1000 mph!"

    The immune system is not easily fooled. Since this is a common observation I am wondering if doctors and scientists should shift towards investigating chronic (subacute) bacterial infections (via biopsies). The observed rise of viral infections could simply be opportunistic (and triggers) as the immune system is busy fighting on the other side, esp. since those are mostly viral infections that are usually easily kept in check by a balanced immune system.
     
    leela, overtrain and Xandoff like this.
  2. Xandoff

    Xandoff Michael

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  3. PDXhausted

    PDXhausted Senior Member

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    Yes- given your cortisol results and symptoms, you should be evaluated by an endocrinologist. They probably will disregard your saliva results, and order serum tests, and probably a urine free cortisol to check for Cushing's.

    Another thing I thought of later, is to check your testosterone levels as well. I believe low testosterone can cause fatigue, and generally testosterone is higher in the morning and lower in the evening.
     
    WillowJ likes this.
  4. chronix

    chronix

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    Gastroentorologist. You could do the breath or stool test but they aren't as reliable as a biopsy. A gastro-doc can also test for other things like celiac and rare diseases like whipple's. But if you don't have stomach symptoms I wouldn't put a visit to a GI as top priority right now. Rather see an endo or better yet a good CFS doc.
     
  5. WillowJ

    WillowJ Senior Member

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    @davidfibdou yes, I agree with @PDXhausted that it might be a good idea to ask for referral to endocrinology to check out your cortisol/adrenal results.

    This isn't necessarily exclusive of having ME/CFS.

    with both low NK cells and HHV-6 this is a concerning combination
    http://www.childrensmn.org/Manuals/Lab/Serology/020733.pdf
    http://chronicfatigue.stanford.edu/infections/herpes.html

    of course it's not possible to diagnose people over the internet, even supposing we had the necessary qualifications to do that. :)
     
  6. taniaaust1

    taniaaust1

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    There are several at this site, all of us have ME and got permanent damage from amytripline, some of us the harm was done just from low dose, trial period.

    Some of us have been left with frozen bladders or in my case after trialing it low dose for a few weeks for sleep, it left me with a prolapsed bowel as one of the affects it does is it have affects on various parts of the body including a physiological affect on the bowel and can slow pertistalsis down (it says on wikipedia) and I already had IBS-C which that drug made so much worse and hence my bowel then got a prolapse.

    This is the only drug so far which has gave me permanent damage of some kind (and Ive trialed a lot). Anyway it does help some but if you have ME and not CFS, I'd be very cautious about this drug and it just may not be worth the risk.
     
  7. xks201

    xks201 Senior Member

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    Call me Mr. Obvious but if your body temp only rises to 96 you have either extreme hypothyroidism or adrenal insufficiency, possibly both, or possibly panhypopituitarism. A TSH test does not cut it when diagnosing a thyroid problem.
     
  8. dannybex

    dannybex Senior Member

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    I agree w/Jeffrez. You've had your adrenal profile done, which doesn't in any way sound like adrenal fatigue, it sounds more like the pre-burnout high-cortisol stage, so in a way, that's a good thing (meaning they probably aren't anywhere near "failure" yet, and one can go with high cortisol for years).

    But I'd definitely get your thyroid checked, and also consider taking your own basal (under the arm temp) for ten minutes each morning before you get up, for a few days, to get the most accurate assessment of your actual temps. Don't go by the TSH test -- I'm learning that anything under 2 - 2.5 should be treated, and some experts say ignore the TSH number completely. Just treat until the temp goes up, and ideally, once your temperature and metabolism increases, your infections should at least partially resolve.

    Also, I disagree with the doc that told you you're not a 'classic case'. Your tests, symptoms, etc., all sound very similar to many who post here...very classic to me. Low body temps, lack of 'real' fevers (due to possibly very low thyroid), which might be due to environmental or heavy metal issues, etc., etc.

    Hope this helps,

    Dan

    p.s. Have read recently on thyroid sites that sometimes cortisol goes sky high if one isn't getting enough carbohydrates in one's diet and/or if one is eating "too much protein". The adrenals will then send out cortisol to break down the protein (or fat) into glucose that one may not be getting enough of due to too much carbohydrate restriction. That happened with me, and increasing carbs has helped to calm me down somewhat, although it's early in the game on that count...
     
  9. overtrain

    overtrain Medical Mafia needs to die via this virus.

    [quote="mellster, post: 377630, investigating chronic (subacute) bacterial infections (via biopsies). The observed rise of viral infections could simply be opportunistic (and triggers) as the immune system is busy fighting on the other side, esp. since those are mostly viral infections that are usually easily kept in check by a balanced immune system.[/quote]

    I agree. And I've repeatedly read how much better ppl feel taking antibios. I wonder how many of us are walking around w bad teeth and bacteria from them getting into our bloodstream... I had an unexplained fever for over a year then bought doxy off a pet food site... broke the fever for good, which seemed to have turned my ME toward recovery. Also had an infected tooth pulled recently and do feel marginally better. Great post.
     
  10. davidfibdou

    davidfibdou

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    "By any chance are you doing things before that 3-5pm crash. That could be a daily post exertional crash pattern going on. Do you still crash at that time of the day if you did nothing at all that day? Does this pattern still happen when you dont do your normal routine and instead rest?"


    Late reply but wanted to answer what you asked and see if you had a response. The answer is no I could sit in my bed all day and around 1 to 6 pm I get exhausted, mustles stiffen up, and the headach feeling like blood leaving my head or too much blood!

    what do you think?
     
  11. alex3619

    alex3619 Senior Member

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    This is why I am very interested in lipopolysaccharides, or LPS. They get into the blood from the gut in ME, and trigger antibacterial effects. There is often no infection, but the immune system does not know that, its reacting to a bacterial product.
     
  12. SOC

    SOC Senior Member

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    I had something similar that largely cleared up with treatment for low blood volume/POTS. Did I miss somewhere in this thread where you said you'd been tested and/or treated for any kind of OI?
     
  13. MiamiMatt

    MiamiMatt

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    Taniaaust1, you asked me above if I could do nothing all day and still get tired. the answer is yes, I can wake up in bed , stay in it all day , and get more tired from 2-6 to where I can barely move. I don't need to do anything all day to crash at that time. do you know what that mean?

    thanks
     
    Last edited: Jan 18, 2014
  14. taniaaust1

    taniaaust1

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    You dont have to go to a neurologist for a rombergs test as this is a test you could do at home. (just look up how to do it.. take care if you do it that you do it in a place where you cant fall on anything which would hurt you. I go down fast and hard with it). Its just something which would show you if you have another non specific ME abnormality sign or not seeing you are missing a lot of the normal symptoms....
     
  15. taniaaust1

    taniaaust1

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    oh.. sounds like something different then OI then. sorry Im at loss to on what to suggest to you.

    I get tired in afternoons but its for me due to the exertion of the daily stuff and just being awake and upright. I used to improve in the arvo (it used to take me ages to feel like Id woken up properly) but nowdays cause I are waking earlier, so that has me burnt out and even needing to often sleep at 3pm.
     
  16. Valentijn

    Valentijn Activity Level: 3

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    Have you been checked for myasthenia gravis?

    With ME/CFS, resting should help somewhat - at least, we don't get worse while resting.
     
  17. WillowJ

    WillowJ Senior Member

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    I can get worse while resting if I cross a 24 or 48 hour boundary after the last time I did something mildly active.

    Or if it's time to eat/drink and I can't manage that.
     
  18. xks201

    xks201 Senior Member

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    Disagree. In subclinical hypothyroidism (which can present with symptoms of extreme hypothyroidism), one can wake up and feel like one did not even sleep. ME/CFS is a set of symptoms. We cannot reserve ME/CFS for something we do not know that causes all ME/CFS because there is no such thing. We can't find a disease we can't name.

    To the OP - order some Thyroid-S and pop about 3-5 grains a day and see if it helps assuming your cortisol levels are good. I did not read the whole thread.
     
  19. Gandalf

    Gandalf

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    How about cushing or maybe restless legs syndrome?
     

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