better after 10 + years!

Discussion in 'Fibromyalgia Main Forum' started by desperation, Oct 4, 2005.

  1. desperation

    desperation New Member

    I have had chronic fatigue for 5 years and I had IBS and other gastro problems for many years before.
    My main problems have been severe insomnia, nausea and lethargy ( amongst many other nasty debilitating symptoms).
    I was always wondering whether having IBS before the onset of chronic fatigue precipitated its arrival. Was I not getting enough nutrients? Was I more prone to infections and viruses? Was it keeping me awake ALL night?
    After what I thought was every test and treatment under teh sun for IBS, chronic fatigue and insomnia ( blood test for allegies ( not sesitivities), vitamin deficiency tests, homeopathy, acupuncture, mssage, healing, hypnotherapy etc etc etc etc. You all understand the lengths that sick people go to making themselves better.
    I had really just about given up and resigned myself to a life of feeling sick. I had got considerably better than from 5 years ago so perhaps this was as good as it was going to get.
    I then heard about a company that does a blood test to test for food intolerances ( 93 food test). It tests delayed reactions to food and the IGg enzyme reactions.
    Anyway, it is all very technical but I sent of a small amount of blood and the results indicated that I was intolernat to eggs and cowes milk. I was very sceptical ( you become this way after many many setbacks) but I thought I would exclude the food and see what happens.
    Anyway, after 3 weeks I began feeling a little better and tehn by 6 weeks I was 100% better. I have tried the exclusion food and each time my symptoms come back so I am sticking to it now.
    I understand that chronic fatigue is a very complicated, debilitating illness and this seems so simple but I urge you to give it a go as it may help some of you. You have to be very very very strict with the diet though.
    Good luck
  2. alaska3355

    alaska3355 New Member

    My son has CFS and has had the Elisa blood test for food intolerances. It came back that he was allergic to beef, all dairy products, corn and baker's yeast. So it's been a tough diet to follow, especially for an 18 year old. But he's getting a little better now. He's been on it for about a month, and a few days ago he was to try corn. Then you wait three days to try another one of your suspect foods. The corn syrup didn't bother him at all, so today he's going to try some dairy. I think if he still limits these strictly for 3 months as suggested that we will see more improvements.

    Glad you are feeling so much better...I hope my son will too!
  3. sunflowergirl

    sunflowergirl Well-Known Member

    what was the name of the company that did the test? Did you send in a sample or what?
  4. orachel

    orachel New Member

    Can you please give me as much specifics as possible about this?! This gives me enormous hope, and your recovery is amazing!! How thrilled are you??!!!!

    I would love to know exactly what test was called, what company called who did the testing, price approximately (was covered by insurance?). Basically, I want to run and have this exact same thing done right this very second! lol

    But this does not sound like standard allergy /intolerance testing, so I need some specifics to get this party started!

    Thanks so incredibly much for this information!!!!

    Look forward to hearing your reply! Is there a website or phone number for them that you can direct me to without violating board rules?

    Thanks again!

  5. orachel

    orachel New Member

    Thanks so much! This info looks amazing to me!!!
  6. Wolverine

    Wolverine Member

    Good info thanx. you should leave a contact here somehow for people to be able to ring / email whatever. Would be good. Some of my main problems are huge intolerances. I actually have an elimination diet here ive been meaning to try. Its the lowest reactive foods at the base level. And i heard of someone who was so sick with intolerances etc, and just tried plain white fish and potatoes for a while, and got ALL his energy back. So much that the dietician couldnt convince him to eat anything more haha. :p Im gonna try this soon at least.

    Take care all. ~Chris~
  7. orachel

    orachel New Member


  8. tansy

    tansy New Member

    It's not uncommon for ibs and GI tract problems to preceed the onset of CFS. It's why identifying food intolerances, getting our diets right, and maximising our GI tract ecology is so important.

    For decades now a % of PWCs have recovered as a result of finding treatable health issues. So far no single approach appies to everyone but it's important to look into food intolerances and allergies since they can produce similar symptoms.

  9. sunflowergirl

    sunflowergirl Well-Known Member

    bumping for an answer
  10. auntyemnga

    auntyemnga New Member

    I was diagnosed with IBS over 18 years ago. Back then they didn't do anything for it. My health has steadily declined. I was diagnosed with FM approx. 8 years ago but the doctor didn't offer any help.
    I finally decided I had to take the bull by the horns and seek untraditional treatment. I had my 1st visit yesterday with a fibro/fatigue center. Reading your post about the blood tests caught my attention. I'm very interested in knowing what lab you used and how I can contact them. I'm attempting to be very aggressive (with what little energy I have). I'd appreciate any info you can share with me.
  11. sunflowergirl

    sunflowergirl Well-Known Member

  12. orachel

    orachel New Member


    I went to my local pharmacy (the Pharm), just like a riteaid or a cvs kind of thing. They only sold castor oil in 2.5 oz bottles. Well clearly that isn't enough!

    I went to the pharmacy counter and asked a pharmacy tech if they could order it for me in larger quantities. She looked in a book of avail products for ordering, and sure enough, they had Castor oil in 12, 16, 14, 24 and 64 ounce sizes!!!!!

    The 64 oz one was like 59$, and I didn't want to spend that much until I see if this works for me, so I ordered the 24 oz one...was like $19 I think. It will be in on monday. Clearly the cost is much lower if you buy it in bigger quantities, also.

    PLEASE, WHEN THE LAB INFO IS POSTED, COULD SOMEONE PAGE ORACHEL ON THE BOARD AND LET ME KNOW? I haven't had much time or ability to type last few days, and I don't want to miss it. THANK YOU!!!!!
  13. Bambi

    Bambi New Member

    I am totally unaware of this thread or whatever so I haven't a clue. I only know I took it ONCE at a slightly inflated dose, by doctor's orders, to try and induce labor when my son was overdue. All I got was the worst cramps I've ever had in my life and vomitted for hours. Sorry about that but it's true.
  14. tandy

    tandy New Member

    not to ingest!!?? am I correct here??
    is it being used for the caster oil packs??

    I've been wanting to look up that site for the recipe for the packs. This is a very old medicinal remedy.
    I vaguely recall my Grandma talking about castor oil and what its good for.

  15. desperation

    desperation New Member

    I'm so very glad that this is giving some of you hope. It has absolutely transformed my life. If you would like any extra information then email me on [email address removed].
    I live in england and had the Cambridge Nutritional Sciences 93 IGg delayed reaction food intolerance test. You can also have it done with York test both in England and the USA.
    Please contact me before you do because the findings can be pretty scary and it is sooooooooooooo improtant to do the diet properly.
    Nearly 50 % of people have an undiscoverd food intolerance ( even people who feel realively well) so it can only help.
    Thanks Lu x
  16. IntuneJune

    IntuneJune New Member

    Since there were some posters names I am not familiar with, I will mention I have CFS, FMS, Sjogren's, IgG deficiences, hypothyroidism, diagnosed with FMS probably 25 years ago.

    Was allergy tested years ago, 20? I was so fatigued I fell asleep at the wheel with my kids in the car, middle of the day, lukily the oldest was sitting in front and when the car started to drift he yelled at me. Also, at the time, I was having frequent diarrheal episodes.

    Anyway, I tested positive for wheat, yeast, corn, soy. And when I eliminated those, improved dramatically. I missed my spagetti the most, now with all the fancy breads you see everywhere, I long for those also, cheese I like but I don't crave. Now with yeast allergies, I am to stay away from vinegar,(which by the way is in so many things) corn starch and sugar is is so many things, cannot have canned tomatoes.....the acid from the tomatoes reacts with the inside of the one does need guidance through the maze.

    I now carry an Epipen, if I inadvertantly eat say a mushroom (this actually happened two yeas ago during a candlelight dinner in a funky little restaurant AFTER the waitress wrote on the order pad in RED INK- ALLERGIES TO MUSHROOMS) To this day I wonder if the cook got fired---he was new.

    Initially, I substituted a lot with rice, but if you eat a LOT of one food, Elisa will give a false positive. I had to cut back on the rice.

    Now, finding out what I was allergic to......and eliminating the allergens did improve the fatigue levels and diarrhea dramatically. However, I still have my FMS pain and as you all know with the pain comes fatigue. But allergy testing was one HUGE step in the war.

    Good luck.....June
  17. shelbo

    shelbo New Member

    Are you in the UK and was it the York test you took? Thanks so much, Love shelbo

    HA HA Perhaps I should read through a thread before asking questions! :)

    Ps Long may your good health continue and thanks for sharing - this sort of post helps us keep the hope alive that every one of us will one day get better...

    [This Message was Edited on 10/09/2005]
    [This Message was Edited on 10/09/2005]