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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Up a creek trying to find a paddle.

Discussion in 'General Treatment' started by Simon Gordon, Jul 29, 2012.

  1. Simon Gordon

    Simon Gordon

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    Dear Reader

    I write this post in the hope of finding wise counsel:

    For 13 years I ate a restricted diet of Broccoli & Beans with Olive Oil and Bio-Live Yogurt. I drank mineral water and took numerous supplements.

    In those 13 years I ate the same Yogurt because it was the only one I could tolerate, in February 2012 the manufacturer changed the genetic code of the Thermophilus bacteria and I had a neuro-immune allergic reaction. To get my old yogurt back I bought a minus 45 degree freezer and the manufacutrer of the bacteria sent me the old bacteria in dry ice. By the time I organised this I hadn't eaten a yogurt for 16 days, upon restarting the yogurt I had at first mild neuro-immune allergic reactions but by July my nervous system was seizing up, I was experiencing paralysis and tremors as my nervous system buckled under the yogurt. I had become allergic to the yogurt because of the 16 day gap.

    I had to stop the yogurt which means I lost 76g of protein per day and all the carbs and various minerals plus 250 billion friendly flora.

    I asked the lead CFS Doctor in Leeds if he could put me on IVIG, he refused and has referred me to a Gastroenterologist. IVIG looked to me like a possible way to calm down my immune system and give my nervous system a rest.

    If I eat any new substance I have a negative neuro-immune response, I don't see how a gastroenterologist can make me tolerate any new substances or even get me back on my old yogurt.

    I need urgent immunotherapy so that I can tolerate protein which is essential for my liver function. I have Gilberts Syndrome and a "null" GSTM1 gene, which means two of my Phase 2 liver pathways are sub par. I find if I don't ingest sufficient Glycine my bile production is poor and yeast becomes a problem.

    I think I need a drug (treatment) to stop my immune system from attacking my nervous system, does anyone know of a suitable treatment or UK specialist I could consult?

    Thank you

    Simon Gordon
     
  2. caledonia

    caledonia

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    Cincinnati, OH, USA
    I can think of few things that might help.

    1. Try foods that you have never eaten before, then rotate the foods.
    2. UltraClear Sustain by Metagenics - Medical Food for treatment of Leaky Gut. This has protein.
    3. Various allergy elimination techniques: allergy drops (instead of shots), or the energy techniques of NAET or EFT.

    I had gotten an allergy test through my naturopath which tested 100 something foods, listed all the ones I was allergic to and how severe the allergy was. Then it came up with the list of safe foods and had a plan of how to rotate them so I wouldn't develop more allergies to the safe foods.

    Then he prescribed drops for the allergy foods, which you would take for several years. The idea was that eventually you would be able to tolerate the allergy foods too, as long as you kept rotating them.The name of the test and drops is Allatess.

    I ended up not doing the drops, but after a year of avoidance, many of my allergy foods are now tolerated.

    The ultimate fix would be to get rid of the leaky gut. I believe there is some connection to a poorly functioning methylation cycle. In which case, a methylation protocol would be the direction to go in.
     
  3. Simon Gordon

    Simon Gordon

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    Hi Caledonia

    In 2008 I had Low Dose Immunotherapy at the Breakspear Hospital, I took a course for about six weeks but had to stop because I started losing motor power in my lower arms and hands, with various other neuro-immune reactions. It took me just about four years to recover from this pretty simple treatment and I still wasn't the same as before the treatment.

    In March 2012 I started working with a BodyTalk practioner but after six sessions I saw no improvement, in fact I got worse as the yogurt reaction got stronger.

    I think I need treatment with drugs to modulate my immune and nervous system.

    Regards

    Simon
     
  4. maryb

    maryb iherb code TAK122

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    Hi Simon, as a fellow sufferer including having a bad reaction to B/spear immunotherapy I sympathise greatly.
    There will be some foods you can tolerate its just a question of finding them, gluten, egg and dairy free is the way I went.
    Carrots, broccoli chicken/lamb are the safest foods, I lived on these for 4 years, could you possibly try just a mouthful?
    Yoghurt is an ideal way of getting protein but maybe you were allergic to dairy all along if you weren't getting any better?
    If you can tolerate peas and rice you can get dried products of both you can mix into a shake.This is a good source of protein.
    de Merleir treats gut problems with a/biotics and then prescribes immune modulators such as Immunovir,4ME etc.
    At the mo thats all I can suggest. Just sorry to hear you are suffering so much.
     
    Simon Gordon likes this.
  5. Simon Gordon

    Simon Gordon

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    Hi Mary

    I had a Chicken breast on Tuesday and 10g of Pea Protein Powder on Saturday, I will try some Lamb Chops tomorrow. Thank you for the advice.

    My neuro-immune system is bouncing around like crazy post the Yogurt seizure and I am trying to work out if the Chicken and Pea Protein are causing a negative neuro-immune reaction.

    Did you ever try steroids to suppress your immune system?

    Regards

    Simon
     
  6. Simon Gordon

    Simon Gordon

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    Hi Mary

    I had a Chicken breast on Tuesday and 10g of Pea Protein Powder on Saturday, I will try some Lamb Chops tomorrow. Thank you for the advice.

    My neuro-immune system is bouncing around like crazy post the Yogurt seizure and I am trying to work out if the Chicken and Pea Protein are causing a negative neuro-immune reaction.

    Did you ever try steroids to suppress your immune system?

    Regards

    Simon
     
  7. xrunner

    xrunner Senior Member

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    Hi Simon,

    I also had a very bad reaction to LDI at the Breakspear. During that time I ended up in casualty many times with severe reactions including seizures, tachycardia and dyspnea. I ended up not being able to eat anything and at that point I also thought that was it.
    It then took me several months to recover. One thing that helped me was NAET but I was lucky to find a very good therapist (and not all of them are). The other was my Lyme treatment. Both have helped bringing my immune and autonomic nervous systems back close to normality.
    Hope you soon find a way out of your suffering.

    All the best.
     
  8. taniaaust1

    taniaaust1

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    You probably know what Im about to say but just in case I thought I'd post.

    High copper can be related to allergies. You say you have Gilberts Syndrome.. Im wondering if you have managed to lower your copper levels, if you arent trying to do something about that.. maybe that would be helpful a bit to the food issues.

    I hope you work out what other things you can eat... I have BIG issues with carbs and used to also have quite a few food intollerances including issues too.

    Ive found that many things I couldnt previously eat.. after long term avoidance of them, I can eat now without getting symptoms.

    The issue I had which carbs caused me (high insulin).. really affected my immune system (eg more sore throats) and severely affected my brain (severe mood swings) along with giving me more tiredness, GERD etc. Discovering part of my food issue was to do with my bodies abnormal insulin response, which I seem to be very sensitive too as well (I suspect due to the MCS), helped solve a big part of my food issues... as I know now to watch carbs consumed.

    I hope you can work out why your body reacts so badly to foods.

    Best wishes in finding the answers you need.
     
  9. ukxmrv

    ukxmrv Senior Member

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    The NHS as you probably know doesn't have much in the way of treatment for very allergic people. I did pay for private infusions of IVIG and didn't notice any positive effects (on my food allergies or elsewhere sadly). I presume that you don't have a good local NHS allergy clinic.

    Are you able to get to London and can afford any private treatment. If so, please consider Professor Brostoff. He used to be a NHS doctor (allergy and immunology) but he has left the NHS and now has a private practise in Swiss Cottage. If you cannot travel to see him I'd write a letter or phone his secretary.

    This is the last address I had for him.
    Prof. Jonathan Brostoff
    Allergy and Immunology Specialist
    34 Fitzjohn's Avenue, London, NW3 5NB
    Tel: 020 7435 7106

    Really sorry to hear how much you are suffering. I was one of the lucky ones helped by EPD at the Homeopathic Hospital but response varies a great deal and that may make your worse (as did the Breakspear to you).
     
  10. Simon Gordon

    Simon Gordon

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    Dear Caledonia, MaryB, XRunner, Taniaaust1 and UKxmrv

    I would like to thank you for your feedback and insights, it's greatly appreciated.

    Yesterday I got a second opinion on IVIG and was told that it would not be possible to get approval from the DoH to treat my condition with it. He told me to investigate Rituximab and the Norwegian trials.

    On the protein front, a poster who I made contact with on another webiste has pointed me in the direction of protein formulas for highly allergic babies, maybe the Gastroenterologist can prescribe this or give me amino acid infusions.

    I am on the case in regard to finding an NAET practitioner.

    I will write to Professor Brostoff.

    Thank you

    Simon
     
  11. taniaaust1

    taniaaust1

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    my CFS specialist had me on the following product
    http://www.pharmafoodsprofessional.com.au/IsowheyComplete.aspx
    which is used in some hospitals for patients who are having issues with eatting foods and cant eat them (as its a complete food supplementation product which also contains all necessary nutrients and due to my issues with foods.. I think my specialist was worried about deficiences).

    Its also an undenatured whey product so helps with the issue Dr Cheney used to say was a universal deficiency of glutathione in ME/CFS which helps with detox and other things . http://www.dfwcfids.org/medical/whey.html

    I thought I'd mention it.. maybe if you contacted the company you could see if they have any trial packets of it? maybe it would help you in some way and would be a complete diet if you are able to tollerate.

    (this product did help me lot for a couple of weeks.. i felt healthier on it then I did for ages so seemed to improve my whole general health feeling and gave me some energy.. but then unfortunately my bowel decided it wouldnt tollerant it no more so i had to stop it).

    but anyway.. thought I'd throw this idea out there as it is something you may want to consider giving a go seeing you are having so many food issues.
     
  12. Tammy

    Tammy Senior Member

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    could you clarify what you mean when you mentioned the manufacturer changed the genetic code of the thermophilis bacteria? I remember reading the story of Jordan Rubin (I think that's his name) who was so malnourished and sensitive to everything due to Chrons...............anyway getting to the point......from his experience he has found thermophilis strain to be dangerous and encourages against ingesting any culture that contains it.
     
  13. Simon Gordon

    Simon Gordon

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    Hi Tammy

    I ate the Rachels yogurt for 13 years, it always contained Acidophilus, Bifido, Bulgaricus and Thermophilus.

    In February 2012 I started having an allergic reaction and I noticed the consistency of the yogurt had slightly altered, so I called Rachels and they told me they had been experimenting with a new strain of Thermophilus that enables them to clean out the yogurt vats more quickly.

    Up to this point I had no problem with the yogurt strains. I was hyper-sensitive to the new strain of Thermophilus.
     
  14. maryb

    maryb iherb code TAK122

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    Hi Simon - no I never tried steroids, I just got through by being very cautious and careful, my diet is so boring I don't think many could cope - just call me a saint:)
    Good luck with Pro Brostoff - I did think about going to see him but I honestly would never consider Immunotherapy/EPD again so didn't know whether it would be worth it. I look forward to hearing about your appt if you could post about it, that would be great.
     
  15. Simon Gordon

    Simon Gordon

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    Hi Guys,

    I've now taken seven NAET treatments.

    There are 15 basic allergy clearance pathways and I've now cleared eleven. I hope to clear all 15 by the end of next week:

    ~BBF (Brain Body Formula)
    ~Egg Mix
    ~Calcium Mix
    ~Vitamin C Mix
    ~B-Complex
    ~Sugar Mix
    ~Iron Mix
    ~Vitamin A Mix
    ~Minerals
    ~Salt Mix
    ~Grains Mix
    ~Yeast Mix
    ~Acid (Stomach Acid)
    ~Base (Digestive Enzymes)
    ~Hormones

    Then the focus can turn to my multiple chemical sensitivities.

    The morning after my first treatment I felt a bit clearer and stronger. The second treatment was given on an emergency basis on a Sunday evening, the previous Friday I had taken some Glycine for my liver, as my liver was struggling due to malnutrition, I had an allergic reaction to the Glycine, it felt like my brain was under serious pressure. That night I was treated for the Egg Mix and I think this was my turning point, for me the Egg Mix is where my major blockage was, I have read of some people's lives being changed after the Vitamin B Mix is cleared and of others when they cleared the Sugar Mix. I needed to clear the Egg so that I could eat protein and cholesterol as my liver was starving. Upon my first treatment the lady tried to treat the Egg Mix but I couldn't even hold it in my hand and instead she did the Calcium Mix, in the NAET process you try to do the 15 in order because it changes the immune and nervous system to better function and you cannot treat other allergies (peanuts, etc) until you clear the 15.

    Four weeks ago I was visiting a funeral parlour, having seizures and experiencing paralysis, last night for the first time in six weeks I was able to sleep on my side and belly, my body had been so rigid I was only able to sleep in one position on my back, with my neck twisting a little bit either way on the pillow.

    More importantly I have eaten 100g of chicken five days in a row, I have taken Pea Protein powder twice, had two poached eggs yesterday and three boiled ones today, this morning I got my Champion juicer out of the cupboard for the first time in 13 years and juiced a glass of carrot juice, it was incredibly sweet. My favourite taste since Friday has been the soft egg yolk, just beautiful.

    NAET is the first treatment in over a decade that has actually made me feel better and improved my condition.

    The NAET lady has saved my life, I was becoming skin and bones and not far off having an anaphylactic shock.

    I continue to have problems in my body but I think I am out of the acute stage and feel confident that in the next couple of months my body, mind and soul will be in a far healthier place.
     

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