MAMADOVE has something to say...Please read...EDITED

Discussion in 'Fibromyalgia Main Forum' started by MamaDove, Jun 30, 2008.

  1. MamaDove

    MamaDove New Member

    I added important things at the end that my brain left out the first go round...tehe

    Noone need respond to this post but please take the time (and energy) to read it if only for the fact that I am making the time and using the energy to write it...

    This post is not about anything I learned in a textbook...
    It's nothing I saw on the nightly news...
    It's nothing written in JAMA journals...
    Therefore, it is nothing that must be proven factual...

    This is my life experience and conclusions I have come to and what has helped me survive to see the age of 40...

    After posting about the Healthy Foods and reading all the replies, I realized once again, people just don't get it.

    Yes, we are all different!!!
    Yes, we have all come by these illnesses from different causes such as viruses, mycoplasms,surgeries, infections,traumas, accidents, stress, etc...
    Yes, we all have different backgrounds, different monetary supplies, different lifestyles, etc...

    But we all share things in common too...

    We are ALL sick!!! Many of us tired!!! I was sick AND tired!!! Then 18 months ago, I was gone...No life left!!! Nothing!!! Doctors filled my head with ways to combat the symptoms of internal bleeding (Crohn's, colits, whatever name they choose to give it) I was bleeding constantly...You can see by my profile I have been diagnosed with most of the auto-immune diseases, including, RA and MS...I ruled them out myself, didn't wait for a doctor to do it for me...I knew that these illnesses I was suffering was coming from something, somewhere...But what and where? As I lie there being pumped full of poisons (levaquin, cipro, solumedrol, morphine, doxy, flagyl, asacol, protonix, vicodin, this list goes on) and given a liquid diet which consisted of broth and jello (cause thats what these experts consider bland, liquid diet for Crohn's disease)...NOT!!! They were giving me salt water with MSG and sugary gelatin with pectin and colors...Is that nutrition, NO, nothing nutritious about it...My body began to swell, my insides and outsides BURNED to the touch, my surgical scars turned beet red, my tongue brown...I was toxic!!! I was dying...I did die...I met my Mom and Dad on the left side of my bed and my boy Moose on my right...Noone else,just them, the ones that went before that I loved to death...My death it seemed, if for only a moment...There was a question posed to me...I could not hear it, but I 'heard' it...


    Then, in my dog's voice (yes he had a voice), he said, MAMADOVE, Papa needs you to stay with him...You cannot come here yet, we don't need you, I am fine with Grandma and Grandpa...Stay with Papa...My boy Moose lost his battle with vaccine induced epilepsy before the age of 7.

    For those who believe I was hallucinating, I was not...I was dying...

    As I came back, a wonderful nurse who called me 'Angel' sat by my side...She told me a secret..."you need to get outta here or they will kill you, find your way out, listen to your body and find the way"


    December 2, 2006

    When a doctors orders for levaquin combined with all the other posions and lack of nutrients nearly took my life...

    It happens everyday...To people just like me...Except there was one huge difference...I was a fighter, always had been. I was always a force to be reckoned with...I withstood my traumatic life and the grief that only comes from losing parents that you adore and a son you could not live without...I have been there and lived through it...I'll be damned if these experts were going to take my life away to fill their pockets, egos and pension funds...Not me!!!

    While they were contemplating adding drugs to the allready poisonous cocktail, my husband and I were planning my departure...First, to pull out the IV's...One by one...Each one we pulled out improved my condition...Why, because each one contributed to the poisoning of my precious body...Simple really...My precious body, the one that God hath made and my parents fed and protected, was being destroyed by something called 'Medical Care'...

    My journey with all these illnesses began with not one trigger, but many...

    1)Blood transfusion in NY after taking a 4 lb. mass that included my ovary
    2)Infection in the incision from the same surgery which required abx (haven't found out which one yet)
    3)Some kind of BUG from my honeymoon in Mexico (the year prior to the surgery above)
    4)More abx treated strep infections than I can count while growing up on LI, NY
    5)Neck injury and surgery (another infection treated with abx)
    6)A Genetic history which included heart problems and severe RA
    7)Living behind a baseball field that was conformed from land while building a highway (if you don't know why they put ballfields and playgrounds where they do, look it up)
    8)Rodent eradication from putting in said field and disrupting the buggers that infested all the homes

    Okay, nuff of that, I could go on but you can very well see that I have covered the large field of 'causes and triggers'

    No, It was not food!!! It was life!!!Life then got real ugly and attacked my immune system...

    Where is the majority of our immune system?

    IN OUR GUT!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

    Whatever you feed your gut, feeds your immune system...

    There is the cyber smack upside the head...

    This is not offensive, this is fact!!!

    Most docs will never tell you that your diet sucks, ya know why? So does theirs...Unless you go holistic, then the advice you get is diet first, medication last...

    Remember I said WHO put me here...I am not religious but I am spiritual...I was before I got sick...I was being guided by the lessons my parents bestowed upon me...Some much harder than others...However, I also knew as a youngen that something just wasn't right with some of their advice...
    My Mom, heart condition at a young age, heart surgery in her 50's, same symptoms of pain and fatigue as I, and even though she ate WELL, she also consumed MARGARINE and those lil sweet tabs called SACCHARIN...Something wrong with that picture??? Absolutely!!! Don't matter how many brussel sprouts she ate, couldn't possibly nullify the effects of the other poisons she ate, BOTH FROM DOCTORS ORDERS!!!

    My Dad suffered from age 39, the same year I came close to my demise (suffering much of the same as I did at age 39, they lost him twice while hospitalized from systemic infection too, it was life replaying itself cause someone missed the lesson)My Dad had the worst bout of RA they had ever seen in 1972, he was in medical journals, they taped his surgeries in teaching hospitals to help others, he was a trooper my Dad, my hero!!! Before he died, he had a chat with his little girl as he lay in the hospital on his final go-round with lung cancer and chemo...He was not coming out this time...His immune system was not fighting back from all the chemicals he ingested, including the fast foods he live on (it was quick, easy, tasted good and he was too sick to shop and cook)Sound familiar? His poor body didn't stand a chance...He never gave it a chance really...So while he lay dying and I was in charge of his final days and his final moments (so as not to leave it up to doctors or nurses) he gave me this advice...'Dont suffer like I did, take care of your self, eat well, don't eat dairy and take high doses of Vitamin D, make sure you do this, please'

    What was he trying to tell me? Just what he said...Now do it! Did I? NO! I was too busy working and living and nutrition took a back seat to a busy NY lifestyle...

    I worked hard to get what I thought I needed, and WANTED...My body swelled, lil by lil, but inflammation was setting in...I ate well but I also indulged at times...NY pizza was the best, still is, but they can keep it...Bagel and coffee, dee-lish, they can have it...Surf and Turf on the shores of Long Island watching the boats go by, Now that's living...Dare I tell you what chemicals I ingested and inhaled each time I indulged...You're all smart people, but why are you so sick??? Have you figured it out yet???

    I have...

    My immune system was being challenged, everyminute of every day of every week of every year...I swelled more, I took more motrin, I couldn't deal with neck pain and stiffness, take more flexeril...I was having trouble working with so much pain, doc recommended zoloft to bring my mood up...HA! All it did was contribute to my IMMUNE SYSTEM going down!!! I had a hunch what it could do back in 1994, docs laughed at me, it is now known to disrupt you immune system...Lucky me!!!

    I listen to my docs cause my parents raised me that way...they knew it all...but wait, my parents died horrible deaths listening to their doctors...WHY?

    I knew why...They never allowed their bodies to heal and were hit by one thing after another due to this thing we call "LIFE"...I could never slow down...I came out of the hospital for gall bladder surgery and was moving to Maine the next day...I had an oophrectomy and was called back to work cuz I was irreplaceable in only 1 week...Hearing phrases like, 'my daughter had what you had and was back to work in two weeks'...Bah! But I listened to my elders and those in positions of authority, heck I was the youngster, what did I know...

    Now, I came back from death only to be stymied by what to do next...My hubby researched and found all my issues were immune system related...Not necessarily auto-immune, like these nitwits said...Immune compromised was the word he used...A lifetime of vaccines, viruses, accidents, ailments, drugs, abx and a diet that wasn't even close to what Nature intended but more what our government decided was best for us...Have you ever known our government to do anything good for us? Not I...In fact, my hubby being a veteran gave me an inside look as to what they are capable of...By the way, my husband suffers from a seizure disorder and PTSD thanks to our great nation...He was subjected to vaccines and a paint primer they called "green death', a vat of which he fell into when his captain decided he was going to make a name for himself and get through that hurricane no matter what...They did and my husband suffers a lifetime for his decision...

    So here we are...Beginning of 2007, coming back from the 3rd hospital visit, one for crohn's, one for hospital caused infection and drug reactions and then one for blood clots treated with that all too nasty heparin...My hair fell out the next day...boohoo...

    While I was living on 80mg of prednisone attemtping to wean slowly so not to destroy my adrenals completely along with Colazal , a magic pill that would help the symptoms of Ulcerative Colitis (wait didn't I say the doc told me I had Crohn's?)Learning how to walk again, hold my head up, living with a body that burned, was swollen unrecognizeable and all because I was diagnosed by these experts with all these fancy diseases...Reminder, if it's a disease, the FDA can approve a drug for it...Is it ever a cure, NO, NEVER!!! Only covers the symptoms...

    I had one more choice to make...

    How do I build up my immune system so I can help it fight back from all this destruction...


    NUTRITION!!! FOOD!!! WHOLE FOODS!!! Nothing processed, packaged, canned, bottled...Oh yeah, just like MAMA used to make me...You know, the stuff we hated to eat...Barley soup, sauerkraut, pot roast (not from the frozen food section), boiled chicken (not from KFC)

    My husband made it a point to disregard the cost of this new treatment we were about to embark on...Hey, the meds were costing over $500/month just for me and they were killing me...We made a list, a master list, and we were going to stick to it...

    A year later, I was able to walk by myself...Drive again, with a passenger watching me of course, able to meet with friends...

    Today, 18 months later, I sit at this machine trying to say just the right thing to make all of you UNDERSTAND that all of us can benefit from DIET, yes DIET!!! It's not the other 4 letter word...It's not a life sentence...It's a way of life to avoid a death sentence...A slow painful death sentence...No excuses...Your immune system called, it wants healthy food only...Do what you must do to make that happen...

    A few examples of how I know what foods can do to a person...

    While hospitalized the first time, my roommate, who was clearly obese even though I could only see her face in the bed from where my dying body lay, asked for a chocolate ice cream and pepsi at 10pm...a snack, she said...By 1am, nurses rush in to revive her, she was having a diabetic emergency...They woke me up for that idiot!!! Now I am the most compassionate person you will find, I promise, but this woman was in there for work to save her legs from being amputated and she asks for and they give her a 'snack' like that??? Are they insane...No, non-profit!!!
    They did it cause the floor was 'dead' that weekend...Nutrition is not top priority in the hospital...SURPRISE!!!

    My good friend, followed my lead and cleaned up her diet after seeing a naturopath and such, cause she saw how I was able to survive what I did and was clearly proving everyone wrong...She did amazingly well in only 3 months, lost 35 lbs, was able to walk without pain...She suffers from much of the same as I do but is almost 60...She started to stay away for weeks at a time and when I did see her I noticed the swelling and that hunched over 'walk of pain'...her husband who has MS was worsening and would not consider our path nor the foods we were eating...He preferred bags of rolos, hamburger helper and hot dogs with these red coatings on them...ICK!!! He is getting worse!!! No kidding...Now she is suffering cause of the stress his condition is putting on her and the only enjoyment she gets out of life is her 'comfort foods'...How comfortable is not sleeping cause all that crap is screaming to get out of your body at 3am instead of enjoying a restful and relaxing sleep??? Can you say dumb? I can, I have, I no longer do!

    As far as pain...I have it...but I also have a problemed liver, pancreas, and Spirit knows what else so pain meds are not for me...Mind over matter works for me...Severe pain vs. the alternative, back in the hospital living on thanks...No options if I am looking to build up my immune system, right? RIGHT!

    The only drugs I take now are Ativan, .5 mg every night to calm my gut because all stress in my life affects my gut, no surprise there...It also was a remnant of the levaquin reaction and I will likely be stuck with it the rest of my life...My new doc begs me not to go off yet for fear of what it will do with the PTSD issue...I am listening to him...I also began LDN to enhance my immune system...I chose that and not Remicade cause more success comes from enhancing the immune system then suppressing it...Get it? I do...Don't have to beat me on the head anymore...

    I had the Sage Medical delayed food allergy tests done and they told me to stop, beef, dairy, carrots, apples, oats and some other foods, all of which I was still consuming and still having problems, hence delayed allergy testing...I could not have done the elimination diet...keeping food diaries for years did not help me make the conclusions they did in one week...Is it worth it?...Can you afford it?...You can't afford not to...That alone can change your life...

    Had the CDSA done recently...Wanted it when I was sick but GI doc said NO, you don't need that test, insurance does not cover it anyway and it's nothing you are eating...Crohn's is a disease with no cause or cure, you must take Remicade if you want to see next year...Well, I chose NO REMICADE ( my new doc says it would have killed me) and I am here, and likely don't have Crohn's, in fact I think it's just a glorified word for 'fat malabsorption and inflammation' both of which were found during the CDSA...

    So here is my story in a nutshell...If you don't believe diet got you sick at least admit nutrition can make you well again...Not a cure perse, but much better quality of life than you may have now...

    My husband reminded me to tell you one more thing...As I awakened from near death, all I could think of was pizza, just one more slice...I promise, just one more...Living in Maine, pizza sucks here but I begged my husband that before he came for his nightly visit to see his dying wife, to pick me up a pie...Bring the video CARS and your laptop and we will have 'date nite'...Date nite was wonderful, the pizza tasted great...all that cheese, that dough and crust were just heaven...hubby left at 8pm...I passed a clot by 9pm...a softball sized clot...Thank you pizza!!! it gave me one more chance and I listened...

    My body is my palace, I will treat is as such, she will be pampered and catered to and listened to all of the hours of every day...I promise...

    I remember telling my husband I needed a 'bat to my head', common saying where I am from, it means you can't learn the lesson as we are teaching, you're hard headed, hear comes the bat...

    Again, no need to reply to this...Now let's start the HEALTHY LIVING we should all be doing FIRST...After all this board is called IMMUNE SUPPORT...Now let's start SUPPORTING some IMMUNE SYSTEMS!!!


    I added this later on...I was cooking for my husband and realized what I left out couldn't be left unsaid...

    My husbands epliepsy has been 'controlled' by diet only after drugs almost killed him too, back in said phenytoin was a must...He gained 60 lbs. in a few months, his gums bled and receeded, his beautiful smile is no more and he wished to leave this life, all from a drug...We omitted MSG, preservatives and the like from his diet along with alcohol and known triggers for seizures and WE LIVE WITH THEM...He recently had one in which I was hurt badly trying to save him, he saw my naturopath who gave him a remedy of essential oils that his body asked for...He had a 'herx' and was deathly ill for a day (the day after he took the remedy...He was pissed at me...He was soon after feeling the best he felt in years...Is he cured? Only time will tell, but I would like to think that he was 'healed' by the remedy his body requested...That one visit changed his life, and mine...

    Smoking seems to be an issue for many of us suffering with chronic pain and stressful lives...I know I thought it reduced stress when I did it, 2 packs a day for 15 years or so...I quit cold turkey in 1993...Got sick the same year :)
    My friends have been told by their doctors that if they were to quit now, all these years that their bodies have adjusted to living WITH the DRUG, that their health would suffer...In fact, I know a cancer patient whose doc believes just that...He is on chemo, radiation and smoking two packs per day...My parents thought that smoking was their only vice, they both had to stop drinking, Mom due to her inflammation, Dad due to ulcers (caused by Motrin), they both died horrible and untimely deaths from smoking after having battled back from so many illnesses...SAD :(

    And the part about me I left out, likely cause reliving it is a problem with PTSD, but I must tell it on here...After 12/2/06, I couldn't walk due to tendon damage, literally my legs would not hold themselves up cause the tendons were 'boingy' and about to rupture, a known effect from Levaquin...My bones were cracking, burning and felt broken due to the enormous amount of steroids (if you haven't been on them, remember this for the future and avoid them at all costs, they truly suck)Every joint HURT, Like hot knife imbedded in them HURT...Horribly painful! My brain was broken, levaquin and solumedrol mixed did that...Fried my brain...And LSD is illegal?!?!? My body swelled so and my hands and feet couldn't be touched or the pain was excrutiating...Have you tried doing anything in life without hands and feet...I prayed for them to be amputated, not exaggerating either...all facts punches pulled! My body, mind and soul were DESTROYED...No medication could help and due to my 'sensitivity' would actually hurt....SOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOOO, all I could do was help myself with the choices I made of what to put back into my body...Aside from Omega 3 supplements to stop the rectal bleeding somehow, calcium to prevent the classic bone deterioration from the pred, vitamin D like my Daddy said to do and the crappy meds I HAD to take cause I had to wean off them for fear of more damage, I did the majority of healing from foods...AND STILL DO!

    I now must get back to finishing my hubby's chili, yes chili, all organic ingredients and NO I can't have any cause I can't eat beef or tomatoes, but I make it cause I love him...and he adores me, obviously cause I am still here, he saved my life!!! I also lost 65 pounds of inflammation in the process...I look better than in my gymnast days and the feeling better part should continue as I keep up this 'healing' work...


    [This Message was Edited on 06/30/2008]
    [This Message was Edited on 06/30/2008]
  2. marti_zavala

    marti_zavala Member

    Thank you for your story. A bit long, but I stuck with it.

    Way to go! You are your own best advocate. Traditional medicine sucks... period. Most pharmaceuticals are poison.

    I didn't grow up with a healthy diet. My mom was the youngest of 10 and she worked in the store/butcher shop so she never learned how to cook. My dad had to teach her. Plus she was a working mom, so we did a lot of Hamburger Helper. This is not food!

    As soon as I got out of the house, I learned what real food tasted like - I was hooked.

    I would go to my aunt - the oldest of the ten to learn how they ate. No preservatives, no dyes, no chemicals.

    I am better when I eat this way, I go downhill when I don't.

    Just go cold turkey, suffer withdrawal for a week, then you feel so much better. And it just continues.

    Then you will have the energy to cook healthy. (I am not well and can only stand in kitchen for 10 or 15 minutes so my meals are easy.)

    Only one thing I disagree with - pain meds. If you can find a natural way, the mind, supplements, good living, then do so but I don't think we should let the pain get out of control - FMS means a lowering of the pain threshold and from what I have read it is progressive. If we let it go on, it will get worse. But I agree with everything else!

    Thanks MamaDove,

    [This Message was Edited on 06/30/2008]
  3. Catseye

    Catseye Member

    Marti's right about pain meds. They damage the gut lining and contribute to dysbiosis. I know some people are in a lot of pain and I don't really know what to do about it. I just want people to be aware that things like NSAIDs, which most narcotics are mixed with, are very bad for the guts. If your pain is out of control, I guess you don't have much of a choice. But if you can do without it, do without.
  4. MamaDove

    MamaDove New Member

    Hi Hon,

    You really didn't need to reply but I'm so glad you did...

    You did it too...and when you don't you admit you go downhill...admitting the truth is half the battle...

    as far as the pain meds go...I am intolerant...meaning I MUST deal with the pain mentally and risk making my body worse due to the long term effects of a chronic pain condition, actually several...But when I was hospitalzied and the double dose of vicodin I took came flying out the nurse and the morphine (double dose they put in the IV caused my arm to turn red and the IV to blow) the answer was clear...They too were poison to my body...

    I must clean out my body to get her well again and she in turn is taking care of me, so no meds for me aside from the two I mentioned and I must look at them not as 'medication', but as 'helpers' in my healing...I will likely progress to the point I will no longer require their help...I PROMISED MYSELF, and I always keep my promises...

    Thank you for sharing Marti, keep up the good work...

    I am off for now, must rest the body and the brain after writing all that...I know it was long but I am being coaxed to write a book about my life experiences and this is like therapy for my broken spirit too, so I am helping myself at the same time...It could, and will be much longer some day. :)

    Have a great one Marti!!!
  5. texangal81

    texangal81 New Member

    And this is what I want to do. But I'm not going to dump everything in the trash right now, I know what that will do to me. Even though the doctors insist my blood sugar is normal, I know something is wrong. I suffer from terrible hunger, I get the shakes and almost pass out. It doesn't matter if I'm dieting, eating a healthy, natural diet and it doesn't matter if I'm eathing ice cream, and YES, pizza! I have the eating habits of a single woman who can do and eat as she PLEASES. After YEARS of every diet known to man, up and down, up and down, I wasn't a yo-yo, I was a ball on a string of elastic!

    I got sick and tired of all the crap that went with eating whatever everyone else told me to eat. My mom started controlling what I ate at birth and now my rebellion is to eat whatever I WANT.

    And it is killing me. I have gained a ton of weight, trying to eat right (based on what the vast majority of diet nuts say) nearly kills me. I am so desperate I'm considering lapband just to get rid of the hunger so I can eat only protein that hasn't been injected with crap and organic fruits and vegetables. If I try that now, I get so sick from hunger that i can't function no matter how much of it I eat. Someone mentioned "tough it out". Between the shakes, the headaches at it causes, constant pain and exhaustion, I simply cannot 'tough out' one more thing. Right now I'm toughing it out at work even though I feel like the walking death.

    I'm now thinking gluten poisoning, additive poisoning, I'm drinking liquid poison right now as I try my best to give up the one thing I thought I could keep - DDP (diet dr. pepper). I went cold turkey last wednesday and it was so bad, I had to get one.

    I've quit drinking, I quit recreational drug use, but THIS is worse than any withdrawal I've ever experienced.

    You are one of my role-models. I accept I cannot do it all night. I continue to research, to learn, to eliminate so that I am no longer SICK AND TIRED too.
  6. Pansygirl

    Pansygirl New Member

    I wanted to reply and say that I read your entire post and I think what you say makes sense.
    I agree with you about healthy eating. We honestly thought we ate healthy at our house , but we have come to see otherwise and are making changes to our diet in a positive way.

    I also appreciate you sharing a glimpse of what you went through to get where you are today~ I believe that is very helpful and I appreciate your insight .
  7. marti_zavala

    marti_zavala Member

    Hi Texan Gal,
    I agree that it is hard. Those chemicals are addictive. Withdrawal is hard. If you can't go cold turkey, then keep doing what you are doing.

    Have you ever considered the Zone Diet? It is not a diet, per se, it is a way of eating that balances your blood sugar and keeps you from being hungry (I agree, you have blood sugar issues - doctors test levels and ranges are not always right).

    Basically, the zone diet is where you eat 20grams of protein at a meal then half of that in healthy fats 10gms then triple the fats to get your carbs.

    so 10 grams fat, 20 grams protein and 30 grams carb.

    Carbs are vegetables, not pasta, grain, breads.

    I have done it and it is very filling.

    Also, another thought. I get so hungry when I am in a crash. Have you considered that you are crashing every day after getting home from work - that your body is needing the short term burst from soda and bad carbs.

    I am fine (even off the Zone Diet) when I am still and rested (whatever that means). On a busy day, after the busy time, I crash and eat, eat, eat. I can't help myself. and NOTHING SATISFIES. Protein is closest but still doesn't do much.

    If you want a synopsis of Zone Diet, let me know. I did a review for myself and I can post it on another thread.

  8. poets

    poets Member

    I found your post very interesting. It really gave me a lot to consider, and it makes perfect sense. Thank you so much for taking the time to type all that out. It's so sweet that you care enough to do all that. I'm going to try and follow as best I can what you recommend. You're an inspiration to us all!

  9. Granniluvsu

    Granniluvsu Well-Known Member

    I know I didn't have to answer, like you said but I thought your story was so from the heart and there were so many things in it that just makes sense. Oh, by the way, I come originally from LI , NY too.

    Oh, I am on drugs but not for pain ( had been living with it for so lomg and not been dxed so I just got used to it.) Tried lots of nsaids but didn;t do anything anyway.

    Now,I am trying to taper off my clonozepam and still find a way to sleep better at night. I do only take it at night. I have been cutting back but then I am not sleeping so well. Also taking Flexeril too. If I cn ever get to sleeping real well maybe I can get off that too.

    I also have hi b/p and am on drug for that but it is pretty high so I don't want to die from a stroke. If I can find anything that will be natural and take care of that proplem then I will take that too but so far have not. Why do natural things or many of them cost a fortune that you can not alway s afford and of course the insurance will not pay for them )-: !!

    Just wanted to say thank you for writing such a great story, from the heart that makes alot of sense to many of us. You are a strong gal and so proud of what you and your DH have accomplished.

    What did you say your Dh does for his epilepsy? I have already forgotten. My son had his first seizure when he graduated HS and was about to start college. He is on meds of course. They have been controlled as long as he take them but I know he has side effects. That may be part of the problem he and his wife cannot get pregnant I am guessing. They want children so badly.

    Thanks again for your time and your great story of strength and, survival by making your own rules. It seems that many of the docs do not know the real truth about many of these disesas and are just trying as best they can or rushing people through since they have no answers.

    BTW, I love the picture in your bio and I read it too, very interesting just like yur story.

    Blessings and hugs,


    [This Message was Edited on 06/30/2008]
  10. jasminetee

    jasminetee Member

    I'm so sorry for all of your losses. You've been through so much. I believe you communicated with your family members from the other side. I read NDE and ADC stories all the time and I'm certain most of them are true.

    I also believe that nutrition is extremely important. I've been intolerant to pain meds all my life and I've had bad digestion problems all my life so I've always had to pay attention to nutrition. I eat as healthy as I can and if I stray from that I pay big time and always have.

    I think some folks can get their lives back with nutrition. For me at this point, it just helps not making things horribly worse but my CFS continues to worsen as does my FMS in ways although some of the worst Sx I had have gotten better now that I'm more bedridden.

    Eat well and be as well as possible. :)

    [This Message was Edited on 06/30/2008]
  11. razorqueen

    razorqueen Member

    I am pretty sure I've seen you post on the Crohn's forum of healingwell.

    My daughter has crohn's as well, she just turned 19, was diagnosed Jan'06. She has not responded to any meds, Remicade worked the best, but for a short time. Her main complaint is LRQ pain,and they can find no reason. She is going for another MRI. She is currently on AZA 200mgs.

    You mentioned taking LDN.... What is that? Could you share abit about that with me? And what is CDSA? Her Gi is really puzzled about what is going on with her, as are we. I know diet is a big thing, and I hope that I can get to the point of cleaning mine up alot more than I have.

    I'd appreciate you sharing abit more about your "crohn's.
  12. simonedb

    simonedb Member

    hey mamadove thx for sharin
    I agree completely
    my new allergy rotation diet is working better than the rec'd meds so cutting most of them out
    I had gallbladder out too, I recall on another post where you mentioned some of your allergies/sensitivities I had a lot of same ones, I wonder if no g.b. brings on certain ones and also it does make our ability to digest fat harder, all ties in to what happened to you later
    they also took my appendix when they went in just in case although I didnthave appendicitis, I always regretted tht, and then this year I heard in the news they finally discoverd the appendix has a function--something to do with helping digestion! For years docs assured me it has no function, but that always seemed intuitively improbable to me, it wouldnt be in our body if there wasnt a reason!
  13. MamaDove

    MamaDove New Member

    Hi fellow ex-Long Islander...tehe

    You asked about my hubby's epilepsy and how he treats IT, he 'treats' it with diet only...From the very beginning, in 1986, when a specialist couldn't treat him properly due to bureacratic bull from the military, he gabe him his first script for dilantin (phenytoin), it was horrible...He did it for 6 months and then stopped abruptly...He went years before another and because I kept records of everything I was able to link a few things that precede the episodes, which are grand mal and violent and debilitating days later. One he had in 2000 did much damage physically and mentally...

    A few of the triggers are lack of sleep, stress, MSG (evil thing), alcohol...Although he has had many sleepless nights esp. when I was hospitalized and our lil boy was sick for 5 years, he has likely ingested MSG in some Chinese dishes that we get once in a blue moon (we order from a special place that makes it special for him), he enjoys a beer every now and then and he can't avoid stress, not married to me...:) He has also had some when none of these things preceded the event...

    I do believe now that it is a protein, salt, potassium link but I don't have anything concrete yet and it is mind-boggling to get that onto paper anyway...

    As I keep touting, find the cause for what ails you, I promise it's there but you must do the legwork to get answers...

    I still have rectal bleeding but unlike before, with these conclusive tests and daily research I am understanding more and more...I know I will get to the rainbow's end, it took time to get this sick, it will certainly take time to get well...I must be patient..haha

    Maybe your son can look at some of the 'triggers', esp. with adult onset epilepsy, they usually come about from specific triggers...My husband also has prefrontal lobe syndrome, there is damage due to military service so we have that to deal with...My husband will not entertain the use of drugs for any of his conditions and at 44, he is in fantastic shape...It's a decision he made after much research and in no way do I intend to sway your son's decision to be on meds...You just asked me to share what we do, so I told you...

    Hope he can find out the source and help himself naturally somehow...Of course, look to diet first, lots of 'triggers' to discover...Websites list them in great length but I warn you now, he would have to eat a 'clean' diet to even consider doing what my husband does, most are not willing to make the change...That's why I brought this aspect up in my post...It's not just me that has changed my lifestyle, my husband began a long time ago...

    Hope that helps you in some way...

  14. MamaDove

    MamaDove New Member

    I remember you too...glad you asked these questions but I am concerned that your poor girl doesn't know about such things as the CDSA and LDN by now so lets see if I can help.

    The CDSA is short for Comprehensive Digestive Stool Analysis, done only by Genova Diagnostics in Asheville, NC. This stool test kit can be ordered by your physician but most GI docs won't consider it, it's more 'alternative' yet can get to the root cause rather than medicating symptoms, which most GIs don't want to do anyway...

    It measures thngs such as fecal fat, bile acid,cholesterol,eosinophils and calprotectin (which can determine the level of inflammation among everythign else happening in the bowel, liver, pancreas, anything to do with digestion) It's fascinating...Most docs do not know how to read the results either so like Barrowinnovations, I found a new doc and together we got answers I have been awaiting 10 years!!!

    You can see Barrowinnovations post entitled toxic guts -----, I will try to remember to bump it to the first page for you after I write this...

    LDN is another controversial area of treatment for many auto-immune diseases and actually is said to work by enhancing the immune system, not suppressing it like Remicade and Azathioprine...Google LDN, low dose naltrexone, or see my posts on here and healingwell to get more info...I don't go into the scientific aspect, I leave that to all that have come before me, Dr. Bihari who discovered its properties in low dose and the Penn State study headed by Dr. Jill Smith...

    I believe that my rectal bleeding is coming from endometriosis with an estrogen aggravator OR a digestive issue with fats being the culprit there...I have just had these tests done and just began the LDN and even had the Sage delayed food allergy testing done which may be very helpful to your daughter...Are you aware that so-called Crohn's disease can be caused by a histamine reaction to an allergen if everyday foods, celiac (gluten intolerance) and ingesting dairy and beef (MAP bacteria)? I tend to believe all the research that has been by outsiders before I ever trust another GI...I have made great improvements since getting off the meds, sticking to a diet that's right for me (still needs tweaking apparently) and keeping far away from doctors...You can see by my story as to why...

    There are many of us dealing with these illnesses in this fashion and have much success...Heck my biopsies never even suggested Crohn's but my egomaniac doc who admitted he was a control freak had no qualms about diagnosing me and pushing Imuran and Remicade...I took one Imuran pill as he advised, the following day took the next one, it wouldn't go down...Couldn't make it go down...Started researching about the lymphoma connection and other issues, no wonder my body was kicking it out...There are so many of us taking what I consider the 'easy' road and not getting to the real problems, likely digestive, hormonal and such...

    LRQ pain could mean a number of things, even endometriosis of the small bowel, gall bladder issues, etc...

    I had scans, MRIs, xrays and I swear the info they revealed wasn't taken seriously if it didn't lean toward their diagnosis of Crohn's...I believe that the drugs they had me on caused the blockage that they wouldn't admit, the sigmoidoscopy caused the systemic infection that shut my liver and pancreas down, more that they wouldn't admit and the more I questioned the diagnosis, the less they wanted to deal with me...I was labeled a 'difficult patient'...This difficult patient is still alive but had I listened to them and began Remicade with all my sensitivities, I would be dead...My new PCP assures me of that cause he worked with a group of people who did very poorly under his Remicade protocol, something he has had to live with...Can't go into more detail than that...Pharma secrets...

    This path to better health for your daughter will require alot of searching for her particular answers, but it can be done...She needs to find out what is causing her body this inflammation, could be as simple as omitting dairy and such...Many people have been 'cured' this way...Look into it for her or guide her to get further info...

    I will bump Barrows post now for you...You can certainly read the LDN posts here and at healingwell, many are progressing quite nicely on that but the major issue is finding a doctor that is willing to go this route, to get her well, not keep her sick...

    Good Luck with all of us, it certainly can take up much of your time but for me and others, its the only way to go...

    Let me know how you make out.

  15. Granniluvsu

    Granniluvsu Well-Known Member

    Hi Again,

    First of all I reread parts of your bio. My, you are such a young lady to have had such terrible problems. I am just thouroughly amazed at many like you who have gone through as much as you have and have survived d- domewhat strong and sanely, I would say. This board amd posts like yours have thouroughly made me feel stronger and how many people are alot worse off than I. I have always tried to have an upbeat attitude but as you know sometimes that is hard. I feel so lucky for what I can do as many others can do so little. I truly feel blessed for what I am able to do as I understand how many people on and off this board are SO much worse than I.

    You are aboaut the age of middle daughter so you ARE young even if you think you are not (-: !! I know too that I have had this stuff for over 25 years and felt like - - - - you know what, for most of them. Just tried lots of OTC drugs that didn't help at all so I gave up especially when I realized that they were probably were ruining my stomach, etc. Went in for symptoms of pain, IBS like symptoms also of constipation, diarrhea, lot of gas etc. I still have the gas but am doing better on that score anyway. The upper and lower GI tests (endo and sigmoidoscopy showed nothing, of course.) Now, it is mostly the pain all over , and the arthritis in my neck area that really is killing me. Oh, well, as they say it is better than the alternative.

    Thanks again for sharing your story, and your strength. I am so glad that you and your DH have each other but so sorry you both have had to deal with what you have all these years, as well as now.

    Also thanks on your info on epilepsy too. I will do some more checking on that but like you said not everyone wants to go total natural, , nutritional, etc. in trying to find its cure ( or should I say for him ever having another seizure). His are all gran mals also. I don't know if he has had any more lately as he lives with his wife and he wouldn;t tell me if he had another one either (-: !! He doesn't drink hardly at all either, maybe one once in a great while, I know. He probably does have some stress at work as he has alot of responsibility but he enjoys his computer work.

    Sorry you can't eat beef or tomatoes, as I love chili too (-: . It does make it hard if you both can't eat the same things either. However, I see you both love each other and are committed to each other, as well as to getting rid of what you both have, or at least lessening both of your symptoms.

    So glad that you have had successes with your nutiritional/natural approach. I have been trying to do this but it is not to easy as you know, including trying to find a supplement that might work instead of a script. Then if you do find one some are so expensive. Do you (especially)both eat mostly veggie or a mixture of things? I know a cousin of mine's daughter has her phd in nutrition and sells some of the natural products. She has reversed her arthritis with juicing and some products she told me about that will give you all the goodies from veggies and juices I think. They, however, are very expensive and the vitamins I take are not cheap either. It is a shame that all this good stuff is so expensive. Do you do any juicing? I don't have the energy to do it and not sure DH would even drink the stuff. Luckily, he is pretty healthy though he did recover from Prostate Cancer about 10 years ago. It does a very big committment.

    Again, lots of soft hugs and blessings to you,

  16. JoFMS

    JoFMS New Member

    Thank you mamadove,

    I have to say some of the responses to you trying to help others in your last post about food were awful, I can't believe there are people out there talking the way they do.

    I used to work for one of the largest veternary nutrition companies and know for a fact that diet and food play a HUGE role in all illnesses. I'm talking diets to get better. Has anyone ever read 'foods that harm, foods that heal'?

    For 4 years I gave advice to vets and owners as to what to feed their dogs and cats for specific ailments. There's scientific proof that putting a dog or cat on a renal diet for example can double their expected lifespan. Dogs that eat green lipped muscle improve mobility, the quality of the protein sources are important, antioxidants. We use dot have diets for dogs with allergies and food sensitivities - all with dramatic results. I could go on forever but what I want to say is yes diet can help us. Unfortunately we do not produce a human diet specific to our needs as we wouldn't eat it but if we did it correctly, I'm sure we would see a noticeable improvement in our health!

    Unfortunately, what we eat today consists of processed foods - some of which e don't even realise - tins, white flour, additives, vegetables wth pesticides and a whole bunch more.

    The foods I avoid are:
    artificial sweeteners
    hydrogenated vegetable oil
    tinned foods
    artificial additivesand many more

    I believe many things caused us to be sick but our environment and todays world do not help us to get better once our immune systems are down and we must face that.

    I do everything I can to avoid anything posionous - household chemicals, fumes, pollution, aluminium saucepans etc

    Even the soil is different from what it used to be - many areas are deficient in selenium, we have genetically modified many of our foods, sheep are given offal, chickens are cooped up - none of this is natural. Our food is overcooked and we lose many of the vitamins.

    Even sea salt and seafood - something that people assume is good for them can contain traces of mercury due to the sea being used as a dumping ground.

    Mamadove - I believe everything you say and hope others can see we are not just talking the average 'healthy diet' but looking far more into it than that.

    Having experience in nutrition - it is easy for me to research and know what I need - it's more difficult finding those foods as our society becomes more and more adpated to our modern, poisoning fast life ways.
  17. MamaDove

    MamaDove New Member

    Everyday, I come to this board and I am inspired by many of you...Your passion, your struggles, your trials and tribulations...I can feel your tears and hear your cries for help...We are all in this together...Sometimes we have to be reminded of that when one of us posts and the exact words don't come out from the keyboard to the screen and someone misinterprets or misundertands completely...

    We have all been there...Some worse than others but some can tolerate more and are given just that...MORE...I was given the MAX of what a human being should ever have to go through and I cannot attribute all the pain and suffering to something as common and understood as cancer is today...I have diseases such as Crohn's, colitis, Fibromyalgia and chronic fatigue~all of which have no known cause and no known cure...

    How do we live with this every day???

    We know we have been poisoned by our environment, by medications that were supposed to help us, by foods THEY claim are healthy cause of that damn pyramid and yet we are literally dying...The more I trusted THEM, the closer I came to death...It's not right and it must be stopped and people like us have to tell our 'stories', the truth of what happened to us...

    When I first joined this board I included in my profile the long list of things that I believe contributed to where I was at that day...I did that in case someone came along and read it and thought "wow, I have that too' or 'I lived there too' or "I took that drug too"..Wouldn't ya know, so many have said they had endometriosis, they had a neck injury and/or surgery, they took antidepressants and on and on...

    You are the only people I can relate to!!!!!

    If you are reading something 'into' my posts and feel the need to 'debate' or 'disagree', I will likely not reply at all...There isn't time in my day for all that drama...I am on a mission and my time and more importantly energy is being used up faster than I'd like(we can all relate to that)I am at this point in my life because I have seen what can happen if you put your trust into the hands of someone can die, or worse, you can live with all these damn diseases...

    Those that responded to my post about healthy diet, I thank you for reading it and I ask you to look at your replies and think about what each of you had to say to what I originally posted... It shouldn't have been debated, criticized or commented on, just a simple reply as to how to begin would have sufficed...It became SOMETHING, from NOTHING...How did that happen? I saw those that were 'excited' become 'intimidated', those with good ideas were thinking twice about what they wrote I'm sure...It scared me...But not nearly as scared as I am living with these illnesses, therefore I did not waste one more moment on that thread and got to the nitty-gritty of WHO I AM and HOW I GOT HERE...My life all laid out for you all to see...And I imagine that when you all read it, you can certainly see something in common with me, just like you saw the first day you came to the board, when you, like I, were so glad that there were others out there just like you. That finally you have found help, or at least compassion...Finally!!!

    So when did we get all wrapped up in 'opinions'...most of us are sufferers of these illnesses, yet sometimes I feel there are 'lurkers' that are throwing monkey wrenches into our lil family here for their own personal agenda (whatever that may be, whomever THEY may be)

    I've lived too long, I know too much...I have suffered all of my life to get to this place, to share this with you, for you to understand...There are answers out there, just waiting for us to discover...Karen (barrow) is discovering better health day by day and in turn sharing that here and helping ME and others have a better quality of life...No agenda from what I see, yet she gets a mouthful here and there and loads of questions...I remember the first post from her that I read, it smacked me right in the face as I lay in the hospital...I said to myself, 'that is exactly what is wrong with me'...My husband agreed, and since that day I have followed that path that led from my fogged out brain to my half broken neck to my ailing gut...The gut!!!
    Oh so simple, yet we tend to deny, disagree and even argue about it...It IS the one thing we can fix with the choices we make...It is the one common denominator in all these issues...The reason I told my story is it all goes back to nutrition...always...for all of us...

    Even as jofms goes on talking about animal nutrition...I saved my lil boy from an earlier death from vaccine induced epilepsy through NUTRITION...The specialists didn't know enough to not feed him Old Mother Hubbard Natural cookies while he was there having his brain put back together...My friend, his nurse, was telling me his seizures were worsening but she was 'spoiling' him by giving him 'cookies'...I flipped out on the phone...I was supposed to be calling to wish him a good night and kiss my boy via telephone, instead I was learning that even my friend, Moose's nurse was trying to kill him with kindness...I begged her to stop the cookies and stick to the diet I left him and his seizures ended that night...While food was not the only trigger, it was the one I could control and I did, for 5 years...I made all his treats (took me 5 hours every weekend) got him the best food I could find (over $200/month) but I still couldn't trust the doctors to do the RIGHT THING for him...Hey, THEY gave him the epilepsy to begin with...Lifetime paycheck...Lifetime of hell for him and his parents...

    It's the same with these illnesses...Please follow Karen's lead (and mine), while you may not agree with everything, I think we could all agree there are those here that we can trust to do what's right and the 'advice' I have gotten from many here enabled me to survive an onslaught that I never saw coming...Our lives of suffering could make one heck of a horror film...Can't we stick together and find the answers together instead of all the alternatives...If you disagree with someone's post, don't reply...It's that simple...We need to keep the information that will benefit our health flowing from me to you... How would I live with myself if I found something that could cure me but I felt better and left the board to go enjoy my life while you all stayed and suffered a few more years? Karen and I are both feeling better JUST FROM NUTRITIONAL CHANGES yet we spend so much time and energy on here sharing what we are learning and experiencing...I began the LDN thread on another board for Crohn's disease and I thought it could benefit some on here for its immune system enhancing properties...I never once indicated for anyone to run out and try it, just thought if I posted about it and how it was going each and every day that it could add hope to someone else's life, like it did mine...I am taking the risk and yet my concern is more about everyone else and if they can benefit...I don't know what I am trying to say here, I am not as eloquent as Karen and certainly some things I write come across as a 2 year old writing it cause my brain got fried...But I am trying...I am on here every day and when I am not I am thinking of all of you and wondering when, when are we going to find the answers to help all of us...When?

    Please, let's all help eachother get through this...We all have IT, we all need something to get rid of IT...

    The old saying rings true...United we stand, Divided we fall

    Lets join hands in cyber space and get busy finding out how to beat the crap outta this thing...It may take as long to find the cure for each of our individual cases as it did to get them in the first place, but we can ride this rainbow together til we all get to the 'pot of gold'...Join me, will you...I won't give up til WE get there and I have faith that you won't either...

    Did everyone understand what I just said ? :)

    I wish I could wave a wand and make you all well again, but since I can't, you help me, I'll help you and you help someone else...Deal?

    Goodnight my friends...
    I send you all Peace,Love & Light and wish you all good thoughts as you have a most restful nights sleep...

    See ya tomorrow~MamaDove
    [This Message was Edited on 07/01/2008]
  18. sascha

    sascha Member

    had a lot of force behind it. yay for you and all you have found out and applied. i am going further into the good food approach to my cfids illness, thanks to Barrowinnovations and now, you. i am convinced it can repair me.

    Once i was so healthy!! i have to get as far back there as i possibly can.

    my eating has been quite good for long time- no wheat, flour (well, a few slipups), alcohol, very little caffeine, no sugar. now i want to fine tune things more- see what can happen.

    thanks for inspiring story- it really packs a punch. very best- sascha
  19. MamaDove

    MamaDove New Member

    Thank YOU for allowing me to share this with you and for reading that long of a post...I am so happy you find it inspiring :)

    Peaceful day to both of you~MamaDove
  20. Catseye

    Catseye Member

    I'm glad to hear you are taking this approach, it is quite necessary. But diet alone may not be enough. You may need to jump start some things with enzymes, betaine hcl and zinc. It sounds like you've been doing pretty good with diet already. Being sick that long, though, like me means some things are stuck in a rut and you need some supplements for digestion and detox. If you have the money, I suggest you go with the stool analysis, too. I think it's way hard and maybe even impossible to get everything back to normal with just diet if you're too far along. The worst is, even with the right diet and supps, it's taking a while. I'd hate to see people waste valuable time.

    I'd at least cut out all sugars (even fruits), grains, legumes and root veggies for a while and see what happens if you want to try with just diet. And use betaine hcl and zinc with meals containing fats and proteins and digestive enzymes with ALL meals. I'm using three 700 mg pills of betaine hcl with most of my meals. If they burn, you've used too much. If it doesn't burn with one pill, try 2 or 3 until it burns, then back off. Don't use it if you suspect ulcers, though.