why are we each so different?

Discussion in 'Fibromyalgia Main Forum' started by NIELK, May 8, 2009.

  1. NIELK

    NIELK Member

    I've been watching and reading the posts here and other first hand accounts about cfs. What strikes me is the differences in people's experiences and what works and doesn't work for them. For example: Valcyte; was talked about recently and there were people praising it's positive effects and how it changed their lives and there were people whose lives were ruined by the negative effects of it to their body. This same trend seems to appear for every medicine or protocol. It is very confusing to me. ( are you confused too?). Do we all have the same disease? Are our bodies just reacting differently? I'm also scared to start anything new because I don't know how my specific body is going to react. But, if I don't try, I'll be stuck in a place I don't want to be.
  2. m1she11e

    m1she11e New Member

    I think from all the reading that I do (as do we all), that it comes down to an immune system that is out of balance and is over producing in some areas and under in the crucial areas. There is so much argument whether it is Lymes or a virus or some people have luck with Thyroid meds or are changing their diets...etc. I think "something" happened to throw each of our bodies "off." It is certainly different for everyone. Then we get into the chicken or the egg theory. What started it all and what is now the results of a body that is full of one or more pathogens and is struggling to survive.

    To me, CFS/ME, FM are all umbrella names for "you dont feel well, and no one is quite sure why." I dont think the Lymes people hardly ever just find Lymes. I think it is an issue, but rarely the only issue. Same is true with the virus' and Mycoplamsa's etc. The list just keeps getting longer too.

    I am VERY confused. The last thing we want to do is make our bodies worse! I will tell you that since I got really good insurance and started pursuing Lymes with loads of antibiotics, then the Mycoplasmas with additional antibiotics, and finally the anti virals, I have fallen to a whole new level of sick. YET, some people are much better after following those routes.
    I wish it was just one thing for everyone. Maybe the researchers will figure out what is wrong with our immune systems and how to balance us out with out hurting us in the process. I think that is when people are going to start actually getting better, and staying better, regardless of which pathogen has been found... (or what the "latest pathogen" in fashion is)

    That is my two cents from some one who is equally confused!!!

    [This Message was Edited on 05/08/2009]
  3. Pippi1313

    Pippi1313 New Member

    We all got here by different routes.
    Some of us know why we're sick, but others are still getting the ol' run-around from the docs & may never get a straight answer.
    The health-scare-system likes simple things: A causes B so the treatment is C. Unfortunately, this disorder is more complicated than that.

    Lotsa Luck!
  4. jasminetee

    jasminetee Member

    From everything I've read and heard, the fact that we all respond differently to remedies is one of the hallmarks of CFS and FMS for that matter. Look at all the fibromites who do well on Lyrica and the ones who don't.

    It's always been this way. These are complex, complicated illnesses. I wish there was an easy fix for us all.

  5. rachel76

    rachel76 New Member

    This frustrates me too.
    I 've come to the conclusion that we don't all have the exact same illness.-Just something similar.
    For example I think the Lyme people are one subgroup, those with Fibro pain only without exhaustion are another group, then there's a group that seem to have digestive problems dominate etc. I haven't go them all figured out yet. Dr Kerr's gene research shows there are several subgoups in this illness.

    The Valcyte thing in you mention -along with other treatments is one thing that perplexes me.

    Do we all have the same desease or is our bodies just reating differently?
    I don't know, I think there's a bit of both.
  6. TeaBisqit

    TeaBisqit Member

    I think this thing may be one infectious disease, but it works with whatever is already floating in your body. No two people have the same combo of viruses or bacteria floating in their bodies. You can get someone who has EBV and CMV but doesn't have Lyme. So that person might have a milder form of this disease and just get some fibro pain and lighter fatigue. But then you can get a person who has EBV, HHV6, and Lyme on top, and that person might have a much more severe form of the disease because the Lyme and HHV6 are still active and dominant. People have all kinds of things floating in their systems. Some people have parasites and don't even know it. Some people have other undiagnosed things that can complicate everything else. So that's my main theory.

    I don't think everyone on the forum has the same illness at all. And part of the problem is a lack of bloodtest for this disease. We can't screen anyone. And the other part of the problem is too many docs overdiagnose anyone with an ache or pain as having Fibro or CFS. I've seen perfectly healthy people who work full jobs and have full lives get a Fibro diagnosis just because they are achey after a full day of work and some time at the gym. That is the doc's fault right there.

    If you feel you really do have CFIDS/ME/FM, you can only listen to your own body and treat it your own way. What works for others usually will not work for you. And you'll end up spending a great deal of money listening to other people and finding no relief and yourself a whole lot poorer.
  7. monkeykat

    monkeykat Member

    At the CDC and CFIDS Assoc Press Conference in 2006, Top research doctors sited that they are finding that ME/CFIDS is triggered by either a virus or a toxin (or both).

    My health fell apart completely after an acute and significant exposure to formalin (mixture of formaldehyde and methyl alcohol) when i was asked to teach in the neuroscience lab. I was standing over buckets of formalin each day and brains soaked in it while I taught other students. i started getting severe migraines, then my health slowly fell apart over the next couple years as I got worse and worse by the week. I developed FMS and MCS on top of the ME/CFIDS.

    Some people who are exposed to mold (mold toxins) also end up with ME/CFIDS and/or FMS.

    Anyway, there are various triggers and combinations from what "they" say.

    (Struggling to) KEEP HOPE ALIVE, Monkeykat
  8. hatbox121

    hatbox121 New Member

    Here is what I think(not that it may mean too much ;)). First of all different people have different triggers, right? Car accident, stress, sickness, surgery.......all stresses to the immune system but in a different form. That may be one of the reasons we react differently. Secondly, there are many many diseases that are the same but have different varients. IE galactosemia, a metabolic disorder that my daughter has. There are 3 varients of the same disease each with it's own characteristics but still the same disease. That may be another reason for the differences. Not to mention the comorbid diseases, the body chemicals of each individual, and the severity of each of us. As far as the medicines go, I react differently to Keflex than other people do. I am allergic to it. Loratabs do nothing for me, while it may help someone else in pain. Some cancer treatments work wonders for some and do nothing for others. Until they find a physical tie that links us all together it'll be alot of differences with the meds and the symptoms. It's the same thing. Just a trial and error thing. Wow, that's alot of rambling. I hope you can follow. I barely can and I wrote it.
  9. richvank

    richvank New Member

    Hi, all.

    It's true that there are many routes into CFS for people who are genetically predisposed to developing it. It's also true that once someone has CFS, it can be manifested in different ways.

    All this being true, it still appears that there is one central issue in the biochemistry of CFS that ties most of the cases together. I say this based on quite a lot of lab testing and on experience in analyzing quite a few individual cases over the past thirteen years.

    This central issue is a vicious circle linking the depletion of glutathione and a partial block in the methylation cycle. There are many ways to develop this vicious circle mechanism. In order to develop it, a person must have inherited a set of polymorphisms in certain genes. The set seems to vary somewhat from person to person, but each set predisposes a person to developing this vicious circle if they experience enough of any of a variety of stressors. The stressors can be physical, chemical, biological, or psychological/emotional, and usually there is a combination of stressors involved.

    Fortunately there is a test and a treatment available for this vicious circle. I am not financially involved with either the test or the treatment. The test costs $300 and the treatment costs less than $3 per day. It can take more than a year to reach recovery on this treatment, depending on how long the person has been ill and how seriously dysfunctional their biochemistry has become. This long time seems to be dictated by the amount of time it takes to rid the body of the load of toxins and infections that have accumulated while the person was ill, during which time their detoxication and immune systems have been dysfunctional.

    I have posted quite a few times about this over the past two plus years, and all the information is available in the archives of this board. The test is offered by Vitamin Diagnostics, Inc., in New Jersey. The treatment includes five nonprescription supplements available from the internet. The theoretical basis for this test and treatment are well worked out and have been presented at international CFS conferences. Several physicians have incorporated this approach into their protocols, and are reporting good results. I estimate that there are at least several hundred patients on this treatment worldwide. A clinical study involving 30 women seeing Dr. Neil Nathan (formerly in Springfield, MO, now in Santa Rosa, CA) showed very good results, and was reported at the recent IACFS/ME conference in Reno.

    I invite anyone who has CFS and has not had the Vitamin Diagnostics methylation pathways panel to get it. It requires an order from a physician or a chiropracter. If it turns out that you have glutathione depletion and a partial methylation cycle block (and most PWCs find that they do), you will have a basis for moving forward. If you or your physician would like more information about this test and treatment, and the theory behind it, I would be happy to email several papers to him/her or to you if you will send me a name and an email address (to richvank at aol dot com).

    Best regards,

    Rich Van Konynenburg

    Best regards,

  10. Janalynn

    Janalynn New Member

    If you think about it, most other illnesses are different amongst the people who suffer from them. No two people who have MS(or other illnesses) have the exact symptoms at the same time and I'm sure different meds work from some and not others.

    When I've talked to people who have FM (in real life) they are nothing like me.

    It is not only confusing, but it's frustrating because we all want something that we KNOW we will work to make us better or at least feel better. Unfortunately it's totally trial and error.

    Plus - I think people are often grasping at straws with CFS and Fibro. "Try this, try that". In a way, I think we're a vulnerable group just because of the nature of our illness.
  11. cfsgeorge

    cfsgeorge New Member

    with no blood/lab test for cfs and an awful diagnostic criteria for cfs allows anybody with symptoms of fatigue, pain, and sleep problems to be called CFS from depression to hypothyroidism. this is why treatments and drugs affects PWC so differently is because we don't all have the same disease calling itself CFS.

    Experts say that 25% diagnosed with CFS will eventually get another correct diagnosis other than CFS. Because CFS is a "throw away" umbrella term, there will never be a treatment or drug that will be seen as a "cure" even if it is because we got too many other unrelated diseases "lumped in" to CFS like depression.

    For FMS, there is no blood test like CFS but it's very easy to diagnose with the tenderpoints so there will not be other diseases lost in the FMS diagnoses to confuse doctors, scientists and patients. CFS on the other hand is a total mess and will never find the cure, cause or pathophysiology as long as patients of depression and other diseases are being labeled and studied as CFS.