Autoimmune DiseaseELLIESPAD, USANAGIRLOTHERS

Discussion in 'Fibromyalgia Main Forum' started by mimilove, May 30, 2006.

  1. mimilove

    mimilove New Member

    Re your post on Autoimmune Diseases the other day, I read and re-read and went to Donna Fezler website; astonishing, disturbing news.

    Warning****** Might be long post for some :)************

    Then I went to the section about Evidence for the role of Environmental Agents in the Initiation Or Progression of Autoimune Conditions. Where they list 9 different ways where environmental agents in the initiation or progression for Autoimmune Conditions. I don't want to say that this is totally my case since I am no Dr, and I have done no test to come to that conclusion; but it sure seems that way to me.

    Elliespad, you mentioned you did not know what silica dust is; it's everywhere, they mention that in there. They use it to make toothpaste..the whitening kind. I used to be an Inside Sales Rep to Dentist, I used to sell all the stuff a Dentist would need, including a very well known, very expansive whitening toothpaste. They used to pump the air down on us so bad to clear the whole building, I would complain, of how cold it was. I was tied to this phone for basically 8 hrs with this cold air (sometimes 55F) coming down on top of our heads. I would bundle up as if it was winter in there, but couldn't wear a hat cause of my headset. Silica dust is so fine.

    And here at my other job just before I left, I went to see this (new city) for vacation; I went to see this advertiser to renew his advertisement. His business is in powdercoating, sandblasting.....SILICA DUST again!! On the norm you have to inhale a lot of that stuff I believe, like mine workers, but like you said some of us our bodies weren't made out like others...very prone to begin with to fall and become sick at the drop of a hat.

    I have always noticed with me, if I ever ate out; I always ended up with a stomach ache. Part of it probably physological (after getting sick so many times, that it's just bound to happen) or probably not.

    Elliespad, you ask about petrochemicals, if my Dad was a mechanic or my Mom might have been exposed? Big, huge question?????????? I will start with:
    Debate: Over whether my Dad is really my biological Father.
    Mom will not admit, other guy came up to me when I was about 17 and asked if I knew who my "real" father is? Told me he is. My Dad is part Chinese, everyone looks oriental but me.

    I was either born blind and without a kidney or soon after one kidney shrivelled up to nothing and one eye suffered blindness in motorbike accident when I was 3. Was born in Africa....they don't keep tabs on those things.
    Dad was not mechanic, he owned many businesses including "Benzene" pumps and I know I have pumped many quite a few times, which in "Africa" you run around barefeet, nobody tells you anything. Now I have read there is a link to Benzene and Chron's and Ulcerative Colitis. They only tell you what they themselves know. Sheer Freedom* So I ran around barefeet a lot, swam in the purest ocean. People ask me, I tell them I had the best and the worst chilhood, because I was priviledged enough that my Dad was very welloff to give us every thing we could ever dream off, then would spank us so hard though.

    But I also have had a RE-MMR when I became a permanent resident in 1997, because I couldn't be bothered to have someone look for or ask to have my documentations on whether I had ever been immunized which I know I had been. The trouble was too much. So I got MMR vaccines, TB skin test, Aids, and all your sexually transmitted tests. The next day I awoke to penny size black/purple ulcers/blisters in my mouth and lumps/bumps in my head, was sent to ENT; biopsy of head done.......nothing. I have read there is a link to MMR to Chrons disease and Ulcerative Colitis.

    I have for as long as I can remember suffered from Migraines and Insomnia, which I always toughed out on my own or took a couple of Advil. The only thing serious with my health has been polycystic ovaries, irregular periods, endometriosis and then I would just keep bleeding non stop period or not. Growing up I always had motion sickness (still), nausea, nosebleeds.....just a general feeling of malaise kind of all the time. But at school an over achiever; I skipped 2 grades. I went to a British Private School and then my country had a "Coup D'Etat" and the guy stopped and closed all the schools. So that was kind of the end of that, and my life diverted. A couple years after I did confront him, and he closed the National Youth Camp down and reopened all the school, but too late for me..........my life had changed, re-routed......no-interest in school anymore, travelling was more fun.

    The reason I am telling you this is because you have told me how much of an "over achiever, will quit at nothing" of a person you are, and I know you probably enjoy challenges like this, I am very new to all this, you have probably done a lot more researches than me, is with the hope that you may be able to tell me something that I might have missed. I know it's a lot of info, and a lot of it very personal.........I am at a point where I don't really care because I believe history repeats itself, this is something that I have been carrying around for a while and something has made it worse and now it's manifested out of control!!!!!

    So, I have travelled all over the world, I have lived with a chain smoker (why I don't know), maybe the fact that I loved him a lot had something to do with it!!! I have lived with a Cosmetic Surgeon, we travelled all over and worked also and the very rich and the very poor.

    I have been married now for 12 years to the most honest person I know, the only person I trust in this world. I lived in a beautiful little town by the coast, suffered migraines but toughed them out, that is where I did the dental job for 4 1/2 yrs, we then moved here. They say it has the lousiest air in the nation currently. It let me know that the minute I moved here.

    I became sick immediately, so did my husband with the flu, back to back, chronic coughs...4 times. Migraines out of this world. I finally started working and this girl told me you can get treated for your migraines. I had never considered treatment for them.

    I went the first time they gave me Toradol. Nothing , they gave me Demerol. They then stopped giving Demerol cause they thought people were just coming to get a fix or something. They then prescribed Inderal, and sent me to a Neurologist, who prescribed Topamax with Inderal. I hated her, cause she had her headset on through the whole consultation conducting personal business. I then stopped going to her and going to see my regular PP, but I continued the treatment. I finaly discontinued everything in Aug 04. I never went back until Aug 05 just before we went on vacation because I twisted my back with heavy work bag. Dr odered some tests (regular cbc) but I was too busy did not do. Figured I would do upon my return.

    Upon my retun BOOM migraines like never before excruciating. My husband begged me to go, by that time I was so fed up, so disgusted with the whole system....finally I did. Dr did not even look at me. Asked if I was depressed I said no, I was crying though. I told him I felt sad, overwhelmed and had migraine. He proceeded to treat me with an IV only and I heard the nurse tell his nurse to go back and tell him that if he adds Toredol to that, that I can get out "faster". He came and told me to call this #. I did thinking it was migraine therapy. Wasn't until I got there that I found out it was therapy alright but a different kind for the depressed. At that point I did not believe I was what "they considered" depressed but then did I even know what that meant, I was just trying to guess by what I remember my sister.

    The therapy changed everyday, from work related. They gave me "Celexa" I immediately felt pain down my spine, buttocks, and legs. They stopped. They then gave me Prozac and Klonopin (3 a day), same thing, then 5 klonopin a day. Same thing. Stop everything. They then gave me Atarax and Klonopin...this time I had muscle spasm they couldn't even read my heart for all the spasms..dr told me my heart is fine. They had to keep me another week to monitor me. Finally Psychiatrist (who I saw maybe once a week for about 2 mins) told me he thinks, my issue is medical and can't treat me there.

    I have been in and out of Urgent Care and Dr's office. I suffered in vain bathroom bound like a dog for 3 months because of miscommunication with my previous Dr from Ulcerative Colitis, he did not believe me. Kept telling me to eat more bananas. My weight went down to 87lbs infront of him and he still did not believe there was anything wrong with me. I strongly believe they manipulate the results of the bloodwork and the MRI. That company works only for them. So much more I want to say, but this is already so long.

    Thank you for listening, I hope I haven't bored you all to death. I am so sick, too bad I wrote so much about the beginning and left out about what is going on right now. If you can think of anyhting please ask.

    Currently: Excruciating pain that won't go away with 30mg of morphine every 12 hrs arms through fingers, pelvic, lower back, upper back, legs, knees, ankles. knees just wanna buckle. Large blue veins all over. My muscles are so weak can barely hold/grip steering wheel, 1/2 cup of coffee, walk. Urine is almost dark orange. Skin discoloration. Half of my legs (verticaly) one tone of brown then the other half darker tone. Identical marbelized dark brown/purple pigmented/striped palm size mark just under groin area. Groin area feels like I have fever there or something. Stomach gets distended after barely half cup of coffee. Nausea, ITCHING, ITCHING!!! losing sight in good eye (left), losing hearing in left ear, bad memory...gosh it's so bad what else. I have very bad tremors, lost all my hair on my arms through my fingers. My temperature is always below 98.6 and my wbc is always fine and dandy. Rbc, hemo, hematocit all over the place, so is thyroid (hyper). I know I am forgetting.

    I have appointment coming up at 2.

    I hope some of you read this, even if it's very long, I am a firm believer in there is a message in a story. I went to a top NeuroSurgeon last week, He did not even make me pay. Told me to give him a little time and he will read my letter and call me because there is some clue in there as to what is wrong with me.

    Please let me know what you think, I thank you in advance for any feedback you may have.

    Mimi
  2. elliespad

    elliespad Member

    You poor doll, you sure have more than your share of exposures too. There is little question your exposures are linked to your illness. With all the Silica dust, do you have any of the lung problems? Breathing problems?

    A few things I know.

    1. Many chemical exposures cause a HUGE CASCADE of FREE RADICAL DAMAGE. To combat this, you must use HIGH DOSES of Antioxidants. Which ones? I'm not sure, but as many as you can afford to take. Maybe Resveratol, Beta Carotene, Vit C, Vit E, Alpha Lipoic Acid, Selenium, CoQ10, Grape Seed Extract, Melatonin, Green Tea Extract, N-Acetyl-Cysteine, Curcumin. Ask here and get ideas from others.

    2. Your body uses up many available nutrients trying to detoxify. You have to concentrate your treatment on giving your body nutrients used to detoxify. Everyone one has a different genetic makeup and, of course, different exposure, but generally, amino acids are used up in huge amounts trying to detoxify. I would start my detox efforts by taking an Amino Acid Complex, along with some targeted amino acids. MikeReynolds has been giving us a lot of advise on this this past week. Detoxing is not generally achieved quickly. This is an ongoing effort. Do a search using his username, and maybe add in some extra amino acids.

    3. Detoxing is uncomfortable. You may need to back off on supplements to keep symptoms at a tolerable level. Using bentonite clay daily, and (according to MikeReynolds) Activated Charcoal sporadically, can help piggyback these toxins right into the toilet.

    Now, you don't say where you live. There is a doctor I treated with about 5 years ago, in California. His name is Dr. David Gersten. He uses amino acids and zillions of other supplements. He is an M.D., a Neurologist and a Psychiatrist. He used to treat Gulf War Vets for free. He knows his stuff. With your specific chemical exposures, that should help in targeting detox efforts.

    I worked with him by phone. He ordered tests and I had blood drawn locally. He goes over all the (extensive) test results and gives you a tape recording of that conversation so you can refer back to it. I paid by credit card and then submitted my bill to my BC/BS insurance and they paid 80%. He was not overly expensive, but I don't remember how much. He has several websites. You can find it at aminoacidpower with the appropriate suffix.

    I hope so of this can be of help to you.

  3. usanagirl

    usanagirl New Member

    Given time and your commitment, free radical damage can be reversed!!!!

    I agree with elliespad that detox will be uncomfortable, but you must hang in there. Let me just say that it sounds like in addition to your other symptoms, you are malnourished as well. I am no doctor, but I can tell you that HIGH QUALITY(pharmaceutical grade) supplements would be most beneficial.

    Vitamin C as calcium, potassium, magnesium and zinc ascorbates
    Grape Seed Extract
    Olivol-olive extract
    Alpha Lipoic Acid
    Coenzyme Q10
    Omega-3 fatty acids
    EPA
    DHA
    Glutathione
    Magnesium
    Selenium
    Vitamin A (as beta-carotene)

    Your minerals should be in the Chelated form for better absorption, but this is just a partial list and should not be purchased through the smorgasbord approach. They must be complete and balanced...not RDA levels.

    FYI- there is a book available through Amazon called ...The Comparative Guide to Nutritional Supplements that most people aren't aware of. They have ranked over 500 name brand supplements and you could always look to see who rated #1...

    I hope this helps you.

    Love,
    usanagirl
  4. usanagirl

    usanagirl New Member

  5. mimilove

    mimilove New Member

    Thank you for your responses. I know must have taken a long time reading through that very long rather personal post. You are both right I believe and I do thank you both a lot for all your help in trying to guide me through the miles of things that I need to do. It is really heartfelt.

    I now live in the central valleys near Bakersfield, Elliespad and I have an HMO, so I couldn't call the Dr. you mentioned to get the bloodwork done. But I will be getting blood work done privately shortly here because I no longer trust my network. Just think I went to see a Dr. on Thurs (Pain) who told me "Oh, you definitely have a Chronic case of Fibromyalgia" and after I told him that I went to see top NeuroSurgeon, I am not sure if he changed his diagnosis but it now reads Myofascial Pain Syndrome, referring me to the Arthritis Aquatic Center. Which I am looking forward to, hoping that it helps me. Husband says we have huge pool outside, what is the difference. Because they don't pay for it. I pay for the whole thing but you have to be referred however.

    And remember the "big mouth" Rheumatologist the one I am going to boot with my 5" heels when I am better....I have no idea, why but her office keeps calling (15 times) wanting to see me again. Word must be getting around. I finally said yes yesterday and I am going to take my husband with me. Now, remember she had told me there is "nothing I can do for you, if it's disability you are after...you are in the wrong office!" After she felt obliged to diagnose me with Fms. When I told her I was already on disability she asked "may I ask for what?" That is the same woman who seeing for the first time ever told me "I don't know why you keep coming back!" I reported her, but the local customer service rep, never put it in my file or reported it higher up.

    USANAGirl.....I just love your name, I always have to remember to put the NA before Girl. Koz I just wanna call you USAGirl cause it's just sounds sooooo kool. You are right. I am probably malnourished to a point. I mean who knows. My husband told me the other day, if it every occured to me that somebody could "manually" be inputting the results in the computer. I have become so "leary, untrusting, doubtful" of my network, not that I really trusted anyone to begin with, but when your body tells you something and you have always had your sanity and you have a bunch of idiots questioning/doubting you and "marked" you like a hypocondriac..........makes me want to fight harder or just give up and tell them to go to hell.

    Like, I called to get a copy of my films from my MRI, she wanted to know the name of the Dr I will be taking the films to, if the Dr was in town and why the Dr needed them. Why I asked? I just want them for me. I still need to know.........so you can do what to them? Makes me doubtful immediately. That radiology company only works for my network, everything comes back negative, I am not the only one saying that, it's bad.

    Unfortunately right now I can't be on any kind of vitamins/antioxidants because I have a thyroid uptake/scan coming up. I do have an appointment with my PP right after which my husband is going to be with me, where we are going to start demanding some stuff, right now as tough as I am, they still see this frail little woman come in thinking they can do whatever to her. I do believe I have a very strong case of severe medical negligence against my network. My husband thinks they are the reason I am this way.

    I will take all of your advise to heart, and try what I feel is best for me. I have put on weight by eating bags and bags of European cookies, chocolate, husband's cooking. Whatever my body can hold until I get sick to my stomach. I hate the look on people's faces when they see me (at dr's office), like I have an infectious disease of some kind.

    Thank you again.......Truely :)

    Love
    Mimi
    [This Message was Edited on 06/01/2006]
    [This Message was Edited on 06/01/2006]
  6. mimilove

    mimilove New Member

    Hello there.......

    Thank you for the kind welcome :) My thyroid u/sound is on 6/7 and uptake/scan in on 6/8 & 9th. Yes I do have a lot going on and yes I am frail, but I have the willpower of a bull!!!!

    If there is such a thing! :) I will go right through all those doctors taking my life for granted and those ridiculing me and not taking me seriously.

    I am little without a doubt...yes, but I have made a lot of things happen! And I will get a hang on this one too, just as soon as I figure out what it is that I have and start to accept it.

    Then I can start taking care of business letting go of some of the anger and frustrations. Until then; I can't I have been wronged too many times.

    Yes I am glad to have found this site yes, there are some good people here.

    Now what exactly do you mean by yeast infection?.........where does that manisfest itself (I mean I know of one yeast infection....and I don't seem to have that on :), not sure if we're talking about the same thing)
    Mimi