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Dr Gordon Skinner, UK?

Discussion in 'ME/CFS Doctors' started by justy, Feb 24, 2013.

  1. SanDiego#1

    SanDiego#1 SanDiego#1

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    Brenda Don't understand the 60%whole grain food and all the millet and then go to (Gluten free )oatmeal. Gluten is in all
    whole grains . Also most rice is now full of Arsenic. My Dr. has taken me off of my beloved Brown Rice completely. I am on a complete Gluten free Diet from A Gluten Specialist-have been now for almost 5 years.
    However if it works for you do it. No meat -only fish and some chicken rarely. Apples, Pears. No tropical fruit.
    CFIDS Dr. said no melons as they ferment in your Gut. Anyway Interesting post. What has helped me with evreything is a Probiotic I get from Vitacost. VSL-3. Another thing my Dr. said was have a large breakfast Med lunch and small meal at night. Or break them all up into small meals after Breakfast. I am taking Naturethyroid. 1/4 gr-only 1/4 of a tablet.
    Also so a compounded Adrenal supplement. Only 1/2 of what is prescribed/

    San Diego #1
  2. Valentijn

    Valentijn Activity Level: 3

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    No, gluten is a protein which is only in certain grains. It is not in millet or rice, or a bunch of other grains.
  3. brenda

    brenda Senior Member

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    San

    A lot of foods have arsenic in them. Rice varies according to where it is grown and California rice has the least (that is where I buy mine) It comes from chicken waste as fertiliser and pesticides. Some rice growers do not use the feed and the land has not been chemicalised for a long time. Rice is such a good food that it is a shame to give it up when you can further reduce the arsenic by soaking and rinsing well and boiling with plenty of water. I have cut back but am not going to give it up yet. If you get your body improved anyway, it will detox the arsenic. I am improving every day atm.
    Valentijn likes this.
  4. justy

    justy Senior Member

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    I have my Genova adrenal test kit, but as i'm going away tonight i will have to do it on Monday next week. I have had to stop ALL supplements and meds for a few days due to severe lower abdominal pain and back pain which took me to casualty on Friday. In the end i had to give up and go home as we had waited 4 hours and told it could be another 4 or 5 more. My GP thought i might have kidney stones as i had blood in my urine but has given me an antibiotic in case it is a UTI. I am amangaing at home with painkillers and lots of water - but the pain has decreased on its own.

    Back on to the Armour yesterday and the feelings of anger and agitation have decreased since i first began - but then i have had a few days off here and there. I also had a horrible experience in a shop on Friday - i think it was like balcking out only i didnt pass out - i was very dizzy suddenly - then my heart went BAM! reall hard then balckness briefly then my heart went very very fast and i felt like i was having an anxiety attack (but i wasnt) I went back to the GP who said it sounds like my blood pressure dropped out and then adrnelaine kicked in to keep me upright. Really horrible experience which has now made me more worried to go out alone (which i dont do much anyway)

    Damn this bloody illness - every time i start to get somewhere i get pushed down again.

    Now i am dealing with:
    restarting all meds etc (yet again!)
    pain and anxiety about kidney stones
    anxiety about passing out
    feeling exhausted yet again
    feeling nasty on the strong antibiotics - stomach not happy (yet again) and antib's always make me feel depressed.

    I know it is hard to keep it all in perspective at times and i am working hard on keeping myself strong mentally.
    I really thought i was getting somehwere with the M.E improving and then hopeful after seeing Dr S that we had found 'the answer' if it is the answer to take thyroid meds then as usual for me it is going to be a long rocky road.

    diet discussion is very interesting - i am hopeless with my diet these days - so hard when cooking for a family and on very limited budget and unable to get out to shops etc - just cant afford a very strict diet right now and i find it makes me depressed having to do it!

    take care all,
    Justy x
  5. SanDiego#1

    SanDiego#1 SanDiego#1

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    Brenda- I washed my rice as you do. However, my Dr. said that did not get Arsenic out as it was inside rice..
    I don't think it matters where you get it. If you know a brand I can get that is safe-would love to know. Most of the people I know that are Celiac or Gluten Intolerant have quit all rice products. Flour, bread, milk. Some of the breads have rice from who knows where.. Also you can get cross contamination from machines used for wheat products in the same mfg
    facility. I am so sensitive it is not worth it to me. Also some Gluten specialists don't even recommend Gluten Free Oats.
    Which I also love. Anyway- I can't do too much detoxing as that ,makes me very ill also.

    Thanks anyway for your advice.

    San Diego #1
  6. brenda

    brenda Senior Member

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    Hi San

    I have been buying from Lundberg farm as theirs has tested with less as have other farms in California but there are some places that have used more pesticides in the past like Northern India I think. I believe that here is another farm safer than Lundberg but don't have any information atm. I am sure that rice has been tested before and after washing and showing less. Need to google.
  7. justy

    justy Senior Member

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    Hi brenda and @San Diego - not meaning to be rude but my thread about Dr S and hypothyroidism is going a bit off topic. Perhaps you might like to start a seperate thread about diet etc?

    Thanks,
    Justy.
    Valentijn likes this.
  8. maryb

    maryb iherb code TAK122

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    Sorry to hear you're not too good Justy. Just want to say on the diet thing - it is hard when you have to cook something else for others and especially more so for us with ME.
    I've been on a sugar,gluten,dairy/casein free diet for some years now, no I'm not better but a physio I saw said it was my diet that was keeping me going.
    I don't look upon it as a diet though - just a way of life for me now. Takes a bit more planning but once you're into it its not too bad:)
    ps just crossed with your post - yes totally off topic!!!
    justy likes this.
  9. sianrecovery

    sianrecovery Senior Member

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    Hey Justy

    What a tough bit, really hope you find that bit in the bottom of the tank that allows you get through it. Don't panic on the kidney stones, I've got squillions of the damn things, and have been being treated for recurrent kidney infections for 35 years now - meduallary sponge kidney. If that's what it is, you will get much better at identifying and responding to an episode of renal colic or infection. I now think of my infections as part of a larger phenomenon for me of lowered immunity, hypercogulation, and tough mo fo biofilm colonies. It's an on-going piece of work. Good thing is - if that's what it is, it shouldn't be hard to find out. Big hug xxxx
    justy likes this.
  10. SanDiego#1

    SanDiego#1 SanDiego#1

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  11. Valentijn

    Valentijn Activity Level: 3

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    It's not about a thread "belonging" to anyone - it's about it having a clear topic, and not accidentally hijacking it.
    peggy-sue, justy, Sushi and 1 other person like this.
  12. SanDiego#1

    SanDiego#1 SanDiego#1

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    VAL-SURELY YOU JEST!!!!!!

    San Diego #1
  13. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Here's my take on keeping threads "on topic:" Say I am in the UK and want to find out about Dr. Skinner. I might use the site search and bingo!--a thread about Dr. Skinner. So I go there and looking for info on Dr. Skinner, but it is mixed in with other topics and I get lost.

    To me, it is better to start a new thread to pick up on an interesting but slightly peripheral topic.

    Sushi
    justy, Plum and Valentijn like this.
  14. justy

    justy Senior Member

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    @sandiego - i accept totally that this is not MY thread to just talk about myself, of course topics can ramble slightly, but my point was exactly as said by Sushi above - keeping a thread roughly on topic is useful for us all - epecially when researching doctors and treatments.

    Sorry if you are upset by my comment - it was meant as a polite request and i am slightly dismayed to see you being a bit off with my feelings.

    Can we keep it friendly and polite?

    All the best, Justy.
  15. SanDiego#1

    SanDiego#1 SanDiego#1

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    Justy- Thank you for your comment. I am not upset-Diet topic started as info from Brenda on your adrenals as to what may help -I thought! That was how I understood it.Diet+ meds.
    All is OK with me.

    Thanks,

    San Diego#1
    justy likes this.
  16. wastwater

    wastwater Senior Member

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    Do people with subclinical hypothyroidsim in ME/cfs generally have antibodies to thyroid,I have overt hypothyroidism with no antibodies,I think it has something to do with interleukins
  17. bertiedog

    bertiedog Senior Member

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    Hi Justy

    Did you get your adrenal results through, I was interested how they looked. It seems to me that they are likely to be pretty poor in view of your symptoms.

    You sound a lot like me prior to treatment with Prednisolone and a bit of h/c and also dessicated thyroid. If your adrenals are bad then you won't be able to tolerate the dessicated but would be better with plain T3 once your adrenals are supported.

    I have been on the steroid since 2002 and my quality of life is improved but it hasn't got rid of the ME. My adrenals are still weak if I overdo the physical stuff. I have just come back from a short break in the New Forest with my partner and dog and I am worse than before I went because of the extra activity but on the other hand if I rest for a few days I will go back to feeling quite good provided I stick within my envelope so to speak.

    The only time I get anxiety now is if I am running low on my steroid or if I continue to walk when my body is screaming at me to stop (naturally I try not to let this happen too often but I do have a tendency to do a bit too much because I have a year old Beagle who has way too much energy).

    It seems to me that my illness has been progressive because for a few years I could get by on half the dose of steroid I need now but I didn't sleep well and still had anxiety. I should say that I have antibodies to my thyroid so I do wonder if I might have an autoimmune process going on.

    Finally I forgot to add that in 1975 I lost 4 pints of blood immediately after childbirth so its highly likely this caused Sheehan's Syndrome which I believe could have led to my later developing ME/CFS.

    Pam
  18. justy

    justy Senior Member

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    bertiedog - we sound very similar! I have also had TWO post partum hemmorrhages in the past 20 years (been ill off and on for 17) Dr Myhill thought i might have an element of sheehans syndrome -but i was able to breastfeed all 4 of my children, whihc makes me wonder if this could be true. On the other hand all the info about sheehans suggests that symptoms can range from mild to severe and may take years to develop. An NHS Endo did blood tests for pituitary and said there was no indication of problems - but i dont much trust that.

    I havent yet done the Genova adrenal test as i havent had the cash - but still thinking hard about it as i am not getting the gains on Armour i had expected (dr also surprised) i am not surprised - i am always complicated (ask the husband he will testify!) Hvae been having problems with Armour which would indicate adrenal issues.

    I am wary of steroids though as they greatly contributed to my deterioration 5 years ago after being put on too high a dose of inhaled steriod for a few years and then given oral courses on top (for lung infections) I swore i would never take them again, but on the other hand i would consider a low dose with the Armour if the test showed a need.

    Dr S is happy to prescribe them if i need for a trial - but without the test results i declined. Dr S generally believes that adrenals will sort themselves out once TRhyroid is properly medicated, but i am unsure about this approach.

    Weirdly since starting Armour my symtpoms have become MORE hypo - now my hair is even falling out!

    Glad that these things have helped improve the quality of your life - wondering if any NHS docs are interested in the possibility of you having Sheehans - that was an awful lot of blood you lost in one go - did you have a transfusion? and were you able/did you breastfeed? if you did did you have problems with milk supply.?

    Take care,
    Justy.
  19. bertiedog

    bertiedog Senior Member

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    Hi Justy

    My last 2 GPs accepted the Sheehan's diagnosis although I have kept away from the NHS as much as I could because of their negative attitudes to ME/CFS. However my new GP wants me to see one of the new trainee doctors to tell him all about my case I think to open his eyes a bit as to how complicated things can get.

    For me the steroid was the one drug I wanted more of. I used to react to everything but not anymore. I remember when I first tried the steroid I needed at least 12.5 mg h/c in the morning to feel better, probably 7.5mg midday and 5 mg in the afternoon. I have never had a high dose of steroid, only very occasionally do I ever get to 30 mg equivalent and that is if I have been out all day doing lots of physical stuff.

    I did have a transfusion in 1975 but they only put back 2 pints and gave me iron tablets to make up. The thing was I had been in hospital for a month previous to this to have iron injections because I was so anaemic! I remember I was so dizzy after giving birth I couldn't stand up, they just thought I was making a fuss. This lasted for a week before I started to feel better but things were never quite the same from then onwards. I started to get severe anxiety/panic attacks for no reason whereas I had never suffered like that before and I went on like that until 4 years later when I got those 2 weeks of flu which set off the severe vertigo/migraines which never went away.

    Actually thankfully the vertigo did go away once I was treated with the steroid/dessicated thyroid. I am almost scared to say it but I have never had a vertigo attack since but occasionally get off balance as part of a migraine but it is nothing like those horrendous vertigo attacks for which I am eternally grateful.

    I tried to breastfeed whilst in hospital but it seemed like there was no fluid in my body and I just couldn't do it, it was so painful so I was advanced to bottle-feed and this is what I did. I think the milk I did have dried up very quickly.

    Definitely it was slow onset Sheehans and that is what makes it so difficult to get diagnosed but I also wonder if there is an autoimmune connection because of the antibodies to my thyroid that I have.

    If you did want to get the Genova test done I can get it for you at cost price because I have a diploma in Nutrition and practioner status. Just PM me for further info if you want.

    Best Wishes

    Pam
  20. Creekee

    Creekee Senior Member

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    justy,

    Fwiw, I had the same experience with Armour. Getting increasingly hypo the longer I took it. My problem turned out to be high reverse T3. Sounds like that's common for those of us with chronic infection/inflammation. Our bodies convert too much T4 to reverse T3, and end up without enough active T3. Typically, my doctor was able to order the tests, but didn't recognize the result and didn't want to treat it. I ended up taking myself off the Armour, started T3 (Cynomel) and instantly felt better. I've now been on the T3 only for almost a year and am super happy with it.

    There's a reverse T3 Yahoo group who helped me through. You can get a lot of info there. None of my doctors are knowledgeable on this, which is very disheartening as it's a common problem and pretty easy to correct.

    Hugs!
    justy likes this.

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