I'm back! and calling all teens again

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by *Isla*, Dec 18, 2003.

  1. *Isla*

    *Isla* New Member

    Hi all!

    It's been ages since I've posted here and I doubt anyone even remembers me, but I'm back none-the-less. A little refresher on who I am: I have had CFS for 3 years. I was diagnosed with it the day before my 16th birthday and as I approach my 19th birthday (less than a month away), they are currently diagnosing me with FM as well. I'm finishing high school at the end of January and in the fall, I will be starting university, majoring in physics. In flare ups (like right now), I can't go to school which certainly puts me at a disadvantage.

    So I'm putting out a call to all young adults with these illnesses. I'd really like to talk to some people about some of the more age specific challenges we face.

    God bless and keep smilin'!!
    *Isla*
  2. snomnky

    snomnky New Member

    Hi, I am 22 and just finishing up my BA. I have been taking it pretty slow, it hasn't been easy, but it is possible. One thing that has been great is the disabilities services at my University, they recognize that i have a medical diability and i get appropriate accomidations, It has been a life saver! You might what to check into what your school offers, it is important to have some people on your side. Also, know what you can handle, and take care of yourself. I have been sick since i was 15, so i know what it is like to be in High School with FM, and I must say College is pretty tough as well, just know what you can do and take breaks when you need them. I hope this helps, If you have any specific questions I would be more than willing to answer them. I don't know many people my age with this disease, and its good to talk to someone going through the same type of stuff. Snomnky
  3. hayley126

    hayley126 New Member

    I'm Hayley. I'm 18, and a senior in high school. I had problems last fall, but got better and school was fine. (CFS, not sure if it's an *official* diagnosis, but whatever) Right now though, it's flared up again and I've missed 3 weeks of school!! I'm new to the board. It's great to know there's another around my age going through the same thing. I'm curious to hear about you and school. Do you have an IEP? (maybe that's only a state thing, I don't know- individual education plan.) I don't... if I don't get better soon I may need one though.

    Thanks!
    *Hayley*
  4. destinygsmom

    destinygsmom New Member

    I'm 50 years old in May, & I was diagnosed with CFS in 2009; although I'd known that I've had something wrong since I was 16 years old, after I'd connected headfirst with the bottom of our swimming pool back then! I'd been showing off for my younger sisters, so I guess it's really in a way my own fault that I got it; but not that I've had as much death & destruction happening to my bodies cells because I didn't know what was wrong or taking the proper treatment for making ATP!<BR>
    <BR>
    Do you take ESSENTIAL vitamins, minerals, & d-Ribose to make your ATP?<BR>
    <BR>
    I'm new to posting, love to converse with you; check out my posts, add me to your friends lists please.<BR>
    <BR>
    My real name is Shari
  5. TigerLilea

    TigerLilea Member

    Hi Shari - Welcome to the board. <BR>
    <BR>
    If you had a head injury at 16 years old from a diving accident, and have had problems ever since, that would not be considered CFS. Have you ever had a CT scan or an MRI to check for a brain injury, or been seen by a neurologist? The majority of us with CFS usually started off with a viral infection where the symptoms didn't go away.
  6. destinygsmom

    destinygsmom New Member

    My blood has been tested by Dr. Sarah Myhill in England, all of my symptoms didn't happen all at once; I've gotten worse & worse as time has passed by, I have had bone scans that are abnormal and show increased dye totally across the top of my whole head [skullcap]! My previous injury & CFS are interrelated, when someone has a sudden deceleration injury they are usually given some type of medication to halt any damage from happening to the Mitochondria! I never was given that medication to halt my Mitochondria's from having been damaged or the brain from being injured; possiby have had a viral infection, I know I've had swine flu & I've had Epstein Barr Fatigue Viral Syndrome prior to that! I've had many infections over the years, but I know it all began with my head/spine injury!
  7. destinygsmom

    destinygsmom New Member

    The blood test that I had done is a test developed in England to test the Mitochondria's functioning ability! It is told about in the article that I posted a link too, read it & find out like I did that CFS is really Heart Failure secondary to Mitochondrial Malfunction! It also lists the doctors that are the references there, the proper treatment for CFS too which has to be taken for life unless your Mitochondria kick into gear & start working correctly! <BR>
    <BR>
    The test is able to count the number of ATP amounts that you have, as well as how well your body is able to build the used ATP called ADP back up to be usable again as ATP! It checks your RBC magnesium, Co-enzyme Q-10 level, plus others; as well as checks to see how much death & destruction has occurred to your cells, from having CFS by checking the Free-Cell DNA because all healthy cells have the DNA inside of the cells not outside of them! Take the time to read the article, even though it's really long; it makes perfect since to the way that we-all--feel, I managed to order the tests kit when they opened the test to those outside of the United Kingdom, a lady in my church paid for it, & my doctor at that time drew my blood which was then packed warmly & sent back to two different laboratories in England to get there within 2 days! The address is listed in the article for the tests...<BR>
    <BR>
    The USA doesn't have a Mitochondrial Function Test! England has one that has been tested & tried; & last I heard, an Estimated 250,000 sufferers with 'CFS' in England! Read the Article posted by me on this site: posted by me, destinygsmom! <BR>
    <BR>
    My doctor's here have the test results & converse with Dr. Sarah Myhill in England about my CFS! In the event that you don't want to know the truth, I'll post the links here for everyone else to see for themselves who's correct between the two of us! Copy & paste them into your web browser! The articles is at http://www.drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

    Dr. Sarah Myhills website is: http://www.drmyhill.co.uk <br><br>[<i>This Message was Edited on 03/30/2011</i>]
  8. TigerLilea

    TigerLilea Member

    Most of us here have probably already read Dr. Sarah Myhill's work. She put her book up on the internet free of charge several years ago. No one knows at this time what CFS is. Heart Failure secondary to Mitochondrial Malfunction has never been proven. That was Dr. Cheney's hypothosis that Dr. Myhill jumped on board with. Dr. Cheney has had other hypothosis' that he has abandoned and moved on from. Cardiologists believe that Dr. Cheney is doing the testing incorrectly and that he is misdiagnosing people with heart problems. &lt;BR&gt;
    &lt;BR&gt;
    If it were as simple as taking d-ribose, magnesium, and Co-Q-10, we would all be cured. That just isn't the case. There is no cure. There is no universal treatment. What works for some people doesn't do anything for others.&lt;BR&gt;
    &lt;BR&gt;
    In the end I would guess that they are going to find several causes for CFS and that we will all require different treatments depending on which sub-group we belong to. &lt;BR&gt;
    &lt;BR&gt;
    &gt;&gt;&gt;In the event that you don't want to know the truth, I'll post the links here for everyone else to see for themselves who's correct between the two of us!&lt;&lt;&lt;&lt;BR&gt;
    &lt;BR&gt;
    You mentioned earlier that you are new to posting on forums/message boards. Comments like the above to kjm will get you either &quot;banned&quot; by the moderators, or members will put you on &quot;ignore&quot; and your messages just won't be seen. You won't make many friends here if you are seen to be mean spirited which I'm sure isn't your intent. kjm has a medical background, a good understanding of medical issues, and is open to knowing the truth. There is no contest here to see who is &quot;correct&quot;. We all have different opinions and are entitled to share them with each other. That is how we learn, and, we benefit from hearing all sides of an argument.
  9. gapsych

    gapsych New Member

    &lt;BR&gt;
    Sarah Myhill is not a credible source for medical advice. She has a lot of misinformation on her web site and had to remove a lot of it.&lt;BR&gt;
    &lt;BR&gt;
    I am sure you are aware of the problems Dr. Myhill has been having. She has been brought up before the National Health Service several times because of her medical practice. She has another IOP tomorrow and could face losing her license to practice.&lt;BR&gt;
    &lt;BR&gt;
    gap
  10. destinygsmom

    destinygsmom New Member

    I also have medical background, &amp; the condition is exactly as it says in the article that I've posted that's on Dr. Sarah Myhill's website; my condition &amp; the response to taking d-Ribose, Magnesium, Calcium and etc. is proof enough too me of the truth of them, you all just go ahead not believing if you don't want to be helped with a regime &amp; info that is really beneficial to your case! My dad is recently retired as a M.D., D.O.! Right now the majority of doctors are refusing to believe, but not all; several here that have worked on my case, now believe totally in it! &lt;BR&gt;
    &lt;BR&gt;
    You know if no one ever believed that small pox was small pox, we'd all have died from small pox by now; just like if there are those who don't want to or just simply refuse to believe in it then; it's probably that eventually, they'll die from it! &lt;BR&gt;
    &lt;BR&gt;
    Heart's in patients with CFS don't really fail themselves, but they stop when the individuals Mitochondria is no longer able to make or rebuild enough ATP! If you read the article, you'll read about how it states that when the Mitochondria begin to malfunction in the heart; the patient's heart Mitochondria develop a faulty switch-over from aerobic metabolism of energy used in ATP production into non-aerobic metabolism of energy that's used during glycolysis type of energy! I know this to be true because it has affected my pO2 &amp; pO2 (tc) levels; they are 62 when I've done absolutely nothing &amp; drop into the 50's when I've walked just a very short distance; I've had other testing done by drawing my ABG's before, during, &amp; immediately after doing sometype of exercise exertion! I have because of it hypoxia, even at rest; if I continue to go when my ATP's get too low, my body makes me hyperventilate to try to push oxygen into my tissues because my Mitochondria somehow won't allow it in whenever that faulty switch-over of Mitochondrial Metabolism occurs! Believe it, or not; but it's true, learning from my situations evidence could help all those who'll listen &amp; try things out themselves! Lives are at stake, I have to tell all individuals that I can; what's been proven true in my CFS, medical testing done! What I had initially been diagnosed with as untreatable severe REM sleep apnea, turned out to have been this faulty switch-over of my Mitochondria Metabolism happening; now I take d-Ribose powder several times through the night with Magnesium &amp; Calcium, &amp; I sleep like a baby!&lt;BR&gt;
    &lt;BR&gt;
    I'm trying to help others with CFS, &amp; you all attack me for doing it; but it's the truth that it is Mitochondria Failure, my blood was tested for the condition in England, &amp; the treatment for making my own ATP for my bodies energy is working! I have a lot less pain than I did before using it! Yet I also know that my condition once I was accurately diagnosed by Dr. Sarah Myhill was closer to my hearts stopping from lack of ATP, then any of those who had been involved in the testing they'd initually done in England!
  11. destinygsmom

    destinygsmom New Member

    I have Mitochondria Failure! It's proven, so if you don't want to believe in it: &amp; learn from what has help me with my energy production ATP, then kindly quit wasting my time &amp; replying to my posts! I know that Dr. Sarah Myhills treatment for making ones own ATP works! What I feel happening in my own case, &amp; see proved through my tests proves to me that those theories that you don't want to believe are TRUE! So don't answer my posts, if you don't want to learn from my experiences &amp; my proven effective methods of making my own ATP; I'd rather not hear negative comments anyways, for any other theory of CFS is in my own opinion if it were true just a polite way of saying that anyone with CFS is just lazy people who refuse to get up &amp; exercise to make themselves have more energy! I know that theory is Wrong, because of my own progress &amp; testing done; so quite answering my posts if you don't accept the reason for CFS being Mitochondrial Failure, &amp; get out there and start exercising because without the Mitochondria's failing us we have no reason for our bodies not having the ability to make our bodies ATP supplies by pushing ourselves to exercise harder for a normal persons body builds more ATP supplies by pushing themselves to exercise more and not giving up! &lt;BR&gt;
    &lt;BR&gt;
    I ask that only those who really want to learn from my situation, diagnosis, &amp; treatments that I've successfully used for the different things that happen with someone with Mitochondria Malfunction/Mitochondria Failure to reply to my posts or post messages to me! &lt;BR&gt;
    What I've said is the truth, I swear in the name of Jesus Christ; &amp; the condition is caused by Mitochondria Malfunction, I also swear in the name of Jesus Christ because I'm not afraid to do it because I know its the truth! I also know that if anyone is going to swear, God has said in His Word that we're not to swear upon anything that's in heaven or upon the earth below; but if we swear truthfully (Matthew 5:34-37), we can swear in the name of Jesus Christ (His name; last part of, Deuteronomy 10:20)!
  12. destinygsmom

    destinygsmom New Member

    You say the test in England isn't approved of as a diagnostic tool to diagnose CFS, but it is approved as a diagnostic test to diagnose CFS in England; maybe not yet in the United States, but the test is being done &amp; it's diagnosing those who are wise enough to use the tool that's been made to do so even when there are those who continue to beary their noses in the sand!&lt;BR&gt;
    &lt;BR&gt;
    Many people here have had the test done, my doctor here in the United States; wrote me a prescription that says Vitamins, Minerals, &amp; d-Ribose are ESSENTIAL medication for this patient because of her Mitochondria Failure, not just supplements! Take as instructed in Dr. Sarah's Myhill's letter of test results. I also have the United States paying for me to have a caregiver come into my house, &amp; help me do the ADL's that I can't do for myself; because of my Mitochondria Failure, and previous TBI from my diving injury!
  13. Scapper

    Scapper New Member

    With energy being so precious......can't you find other ways to use your energy positively.&lt;BR&gt;
    &lt;BR&gt;
    That 2 people would go back and forth like this on a &quot;health related forum&quot; is beyond me and honestly quite sad.&lt;BR&gt;
    &lt;BR&gt;
    Meanwhile, this girl wanted to connect with other TEENS and this thread has literally been hijacked -- so not right.&lt;BR&gt;
    &lt;BR&gt;
    My lesson from reading this madness: Allow others to have different opinions.&lt;BR&gt;
    &lt;BR&gt;
  14. jole

    jole Member

    Unless I'm mistaken, the first few posts were dated back in 2003.....
    Not sure where they came from, or how she started in on this thread.....<br><br>[<i>This Message was Edited on 04/05/2011</i>]