CFS symptoms before MONO/CFS?

Discussion in 'Fibromyalgia Main Forum' started by babyk902, Apr 21, 2008.

  1. babyk902

    babyk902 New Member

    i've been really thinking about how my cfs has affected my life lately and somehow i thought of something i've never thought twice about before.. i "came down" with cfs about 4 summers ago after graduating high school, with a bout of severe mono... however, a couple years before that i had symptoms that would appear often that included a severe rash (which i deeply believe derived from aspartame), it would be all over my body and i needed some sort of steroids to calm it down, i typically ingested a lot of aspartame and equals/diet cokes/gum during that time (all throughout high school) so i really do believe there was some sort of connection there. i think the rash was some sort of viral infection since i would have aches, feel feverish, and have no appetite whatsoever, which is actually VERY similar to some of my CFS symptoms that appear very often.. minus the rash, which i have not gotten since i've come down with cfs because i immediately stopped my aspartame intake when i became so ill.. i also had problems with headaches and stomach pains, and im starting to think that maybe all this time i've had cfs but it was essentially trigged by my mono?

    i really do believe that my cfs was impacted greatly by aspartame, and i know aspartame had a tremendous and horrible effect on me aside from having any cfs connection... i'd be really curious to know what people's thoughts on this were? in your own cases do you recall any of your cfs symptoms prior to actually coming down with cfs?? maybe we've all had this for longer than we actually realized until it was triggered by some sort of infection of event
    [This Message was Edited on 04/21/2008]
  2. woofmom

    woofmom New Member

    Aspartame messes up neurotransmitters in the brain. It also damages the liver. It is also highly acidic. Aspartame use is most likely the reason for your illness.
  3. hubcap_halo

    hubcap_halo New Member


    That's such a good question.
    First, I think you are right about aspartame. I was reading about Dr. Janet Star Hull who had contracted Graves Disease she believes from Aspartame. She's big into detoxing.

    I got mono while living in Seattle, but I definitely think my health was slightly worsened by the weather there, and the fact that I was bartending in a smoky bar. I think my onset was "sudden" but there was some lead up to it from the mold in Seattle and all the smoke. I think for a lot of us there may be a genetic predisposition as well.

    I'm curious what kind of protocols/treatments you are following. I'm a New Yorker too, I live in Brooklyn (Williamsburg). I've had it for 12 years in varying degrees. After a bad bout of mono I couldn't work for a year, but after that I recovered enough to work freelance and part time. I tried Valcyte last year which set me back. Now I'm working with a doctor of chinese medicine.

    Do you see any of these New York doctors? Levine or Enlander? If you want to talk or trade New York stories, say hello. patrick at skylab-inc dot com.

    I hope you recover soon babyk.

  4. erica741

    erica741 New Member

    I understand that aspartame has been found to be toxic to many people. I'm not disputing that or even the fact that could cause CFS.

    My question is: How do you account for the millions of people who consume aspartame every day and never get sick?

    Do you think those of us who get sick from it genetically or otherwise even more sensitive to its toxicity?

    I have a friend who is a recovered alcholic, used to smoke and even do cocaine, and consumes tons of diet soda, and she is one the healthiest, most energetic people I know.

    On the other hand, before I got sick, I lead a pretty healthy lifestyle (besides on reflection my diet soda consumption). It is just genetic lottery or something like that?
    [This Message was Edited on 04/21/2008]
  5. binxi

    binxi New Member

    i thought people were meant to have had cfs hundreds of years ago? don't think they drank coca cola back then.
    could it be an allergy? i know cfs causes lots of allergies, but might be different if it happened before mono. you could be right for all i know, it just sounds a bit strange to me.
    to answer your question though, i have had postural hypotension for as long as i can remember, but nowhere near as bad as it is now- i have wondered the same thing
  6. bunnyfluff

    bunnyfluff Member

    You had a "rash", and had flu-like symptoms?? Have you been checked for Lyme?????

    BTW- aspartame is pure poison for ppl w/ Lyme disease. Get it checked out. Many, many of us here have found out after needless years of suffering (10 for me) that we had Lyme, not this mythical CFS that the Dr's labeled us with.

    That's my story......and I'm stickin' with it!

    My best,

    PS~ just saw you live on Long Island, as well! Practically "ground zero" for the Lyme epidemic!![This Message was Edited on 04/22/2008]
  7. babyk902

    babyk902 New Member

    hupcap_halo, i haven't actually visited any NYC doctors yet but have been so blessed to have found two of the most knowledgable doctors who both work somewhat with kinesiology, both located in suffolk county long island.. one helps more so than the other, and his protocols involve more of a vitamin and supplement treatment whereas the other doctor i've been seeing uses solely holistic medecines, which really only help temporarily.. they're both wonderful doctors though. how nyc treating you?? what doctors do you see?

    erica- i completely understand where you're coming from, because most of my friends did their fair share of drugs/smoked cigarettes/alcohol, and are some of the healthiest and energetic people i know too, and it hurts to be able to admit that sometimes, but thats the truth.. i think maybe in my case it has to do with very weak genes (my mother has cfs also), for example that a virus is going around, not everyone gets sick, some people get cancer some people dont.. for whatever reason that is, and i guess unfortunately there are a few of us that aren't so lucky and somehow come down with cfs. who knows!

    binxi- i've never thought of that before! it must have been some sort of allergy, and i've actually never had it tested but i know it definitely wasn't doing something good to my body

    bunnyfluff- thanks for your suggestion, i have actually had that checked out several times in the past, and i've been positive for "borrelia" which i do believe is a type of lyme, or something along those lines, but it apparently hasn't been active in a while.
  8. bunnyfluff

    bunnyfluff Member

    for borellia you have Lyme. It can lie dormant for decades, and hide in the tissues, only to become active in an opportune moment. You need to see someone that has a clue.

    from :

    As a Lyme Disease sufferer myself, I want to help you get on the correct road and that starts by trusting the information you read here.

    I think most people are amazed at how small a tick can be, the size of a the period at the end of this sentence. Not just Deer ticks transmit Lyme, all ticks are carriers. Many have told me they thought they had a black head pimple when in fact it was a "feeding" tick. Others describe, a freckle "with legs". They can be black, brown or tan and found in your backyard, parks, forests, everywhere. The most common place to get bitten is in your own yard.

    Lyme doctors are learning Lyme may be transmitted sexually, through saliva, organ donation, blood transfusions and passed to your children congenitally. It is not uncommon for an entire household to test positive for Lyme, not one of you will likely have identical symptoms.

    Lyme Disease, which is never talked about or discussed in the media, is the fastest growing infectious disease in the U.S. and the number one vector (insect) borne disease. Yes, you are far more likely to get Lyme Disease than West Nile Virus, at least 10 times more likely. You can be bitten and not know it and Lyme Disease can "percolate" in your body coming out one symptom at a time over years, or it can appear in instant.

    CFS isn't a disease. It just means they have given up. But don't you give up.

    If you have Lyme (sounds like you do), you can go blind, become paralyzed, have heart involvement.....all before you even know what is happening to you.

    Everyone in our family has Lyme, and not one of us can tell you when or where we got it. All I know, is that I am fighting to erradicate the beast, as well as all of the ignorance that surrounds it.

    My best,
  9. hubcap_halo

    hubcap_halo New Member

    I'm so glad you found these good doctors.
    If they are working for you, especially the one, I would say stick with them.
    Two perspectives is enough without confusing things.

    I see two doctors as well. One in NYC, Dr. Levine and she is very western, science based and does not have extensive protocols. She is very smart though and has helped me learn a lot more about my specific ME/CFS. Most of my protocol comes from a Dr. in Minnesota where I'm from. She's an integrated MD and she works with the best from all the protocols. She's wonderful. I also see a Doctor of Chinese medicine for qi gong and acupuncture.

    I love NYC. I actually moved here in 2005 with this condition. I've lived on the west coast and abroad and I always knew I had to live in NYC for a time. I had a relapse in 2006 that I'm still trying to recover from, but today I worked out and went for a run and was up all day feeling almost normal so that's a good sign.

    We'll see. I hope to be returning to part time work soon, but that may be a few months away.

    I hope you are doing well on Long Island. I've heard it's beautiful. I'm glad you've got family and friends there.

    Take care,

  10. babyk902

    babyk902 New Member

    thank you for your info, but now you're making me worried haha how can i get tested for thsi?? i would definitely be curious to know from a real "legit" test to determine whether or not i do in fact have lyme or not, i think its really important for everyone to know this

    if anyone knows please let me know!!!
  11. frosty77

    frosty77 New Member

    No clue how to get a test for Lyme - from what I've read I believe you have to have your primary care order a special one as the general blood one only test for new infection, not old.

    I personally do not think there is any connection between aspartame and FM or CFS. I've had both all my life, long before my first taste of aspartame (it was not even discovered when I was a kid) - and as another poster pointed out, FM and CFS has been around for hundreds of years and aspartame was first discovered in 1965 and not approved for use until many years later.

    I've been using aspartame my whole life - stopping use of it has zero effect, so I do not think aspartame has done anything to me. But everyone is different.
    [This Message was Edited on 04/28/2008]
  12. erica741

    erica741 New Member

    Frosty77: Watch out! :) Everytime I have even mentioned on here the possibilty that aspartame, splenda, etc may not be too bad in moderation, I've been slammed.

    Bunnyfluff: Do you have any information you can post regarding aspartame and lyme?

    It is always nice to get everyone's opinions and experience on this board, so thanks for sharing.

    [This Message was Edited on 04/28/2008]
  13. erica741

    erica741 New Member

    I am just learning about Lyme disease, but from what I understand it is caused by the bacteria called Borrelia burgdorferi.

    If you have already tested postive for Borrelia burgdorferi, you should probably get further tests for lyme. I'm not sure where you should start though. Igenex is supposedly the best (or one of the best) for detecting chronic lyme, but you may want to first get tested through a more traditional lab. That would be an easier and less costly first step. Whatever lab you go through, you should try to get a Western Blot in addition to any other tests your doctor wants to run.

    If those lyme tests are negative, I recommend getting tested by Igenex. It is pretty easy, but they don't take insurance so you have to pre-pay.

    All you need to do is send this form in with your blood samples:

    The intial tests to get are:
    #188 Lyme Western Blot IgM
    #189 Lyme Western Blot IgG

    If you have EBV or any of the herpes viruses, you may also want to request these tests:
    #488 30-31 kDa Confirmation Igm
    #489 30-31 kDa Confirmation IgG

    The "confirmation" tests will confirm whether any positive results on bands 30 and 31 are due to B. burgdorferi because the Western Blots can give false positives if you have certain viruses (I'm guessing bands 30 and 31 are most susceptable to false positives.)

    You can also call Igenex and request the kit they send out for the initial lyme tests.

    I'm really new at this, so you may want to post on the Lyme board regarding testing and any other questions you have regarding lyme.

    If there is any information I can help you with, please let me know.

    Good luck!

  14. munch1958

    munch1958 Member

    You really know your stuff and have done your homework. Wish more would too!!! Kudos to you.

    We have Google University now with access to more info than ever before plus the power to browse Pubmed. If there is a word that is not familiar then Google define:
    plus the word you want to get a definition of.

    like this:


    To find out what's wrong with the current ELISA testing for Lyme please read:

    See the Dearborn Conference or How the test was spun

    Look under Failure of Testing in their own words link.

    It's 14 pages long so I won't post it all here. The gist of it is that in order to have "early Lyme" or stage 1 you must also have "late Lyme" type swelling of the knee to get a positive test.

    The Elisa test is done first followed by a Western Blot. The only people that score high enough on Elisa usually have a big swollen joint from Lyme.

    In the first few months post infection almost no one has ABs to Lyme yet. The Elisa is measuring ABs. No ABs equals no follow-up WB.

    The Lyme spirochete has 132 functioning genes compared to the syphilis spirochete which has 22. The disease model for the other spirochete based infection should be adopted for treatment of Lyme Borreliosis.

    Plus the bands that were taken out of the WB at the Dearborn Conference should be put back into the test.

    According to this document...

    "The usual case of the chronic Lyme victim is that they have had chronic fatigue for several years before finding their way to a specialist that understands that the blood testing schema proposed by the 1993 version of Alan Steere, fraudulently accepted by the CDC and accepted by the AMA, is an elaborate concoction of foolery intended to set up a monopoly on testing set up on the OspA vaccine.

    Keeping in mind that the camp (IDSA) are only interested in the profit in vector-borne disease and not in anyone's better health outcome."

    Also visit:

    Listen to Sue Vogan's weekly radio Lyme broadcast on Thursday nights via Tropic Wave radio. Details and show schedule can be found on

    My Lyme-sister Dottie and I will be on the show on June 5th. (That's a tentative date so it's subject to change.)

  15. bunnyfluff

    bunnyfluff Member

    What they said~ go to the Igenex site and you can order the kit. You can get your blood drawn at just about any Dr's office. Be sure to do it on a Mon-Tues so the blood overnites during the week.

    Funny (not haha) but when my hair started falling out is when I got really freaked out and looked harder into what was making me ill.

    You will find for most people that there was some "smoke" before the fire broke out. Ppl don't put it all together. Once you find out what's going on, and you can stand back and look at it, you go "yeah, I see the big picture now!"

    Best of luck to you. I hope you can be one of the lucky ones like so many of us that have found out what was making us so darn ill.

  16. babyk902

    babyk902 New Member

    i really appreciate all the info, its so helpful.. and it would kind of be a relief to know that maybe this is after what's been causing my illness but we'll find outt i guess! ill keep you all updated :)
  17. LonelyHearts

    LonelyHearts New Member