Common diagnosises / treatments associated with CFS/ME/FM ?

Discussion in 'Fibromyalgia Main Forum' started by xchocoholic, Jul 6, 2008.

  1. xchocoholic

    xchocoholic New Member

    Is there a list of these anywhere ?

    I know we have a list of symptoms, but many symptoms can be caused by just one diagnosis / medical problem.

    So far, I've read that anyone diagnosed with CFS/ME/FM can have 1, several or all of these ...

    1 - food intolerances
    2 - chronic hypoglycemia
    3 - leaky gut
    4 - candida
    5 - nutritional deficiencies
    6 - orthostatic intolerance
    7 - dysautonomia
    8 - bacterial infections
    9 - viral infections
    10 - Lyme
    11 - parasites
    12 - mold
    13 - chemical sensitivities
    14 - adrenal fatigue
    15 - heart problems
    16 - low blood volume
    17 - Hypothyroidism
    18 - GD-MCB (Glutathione Depletion - Methylation Cycle Block)

    Only over the last 3 years, I've treated food intolerances, candida, chronic hypoglycemia, orthostatic intolerance, bacteria, parasites ... and was just wondering what I was going to learn about next.

    Thanks .. Marcia

    Edited to add: I see Dr. Myhill looks at this illness this way too. I'm still looking for what she treats for. I know she treats for food intolerances, candida and hypoglycemia, but I don't know what else and I haven't found a list yet.

    "Actually, I do not consider CFS to be a diagnosis at all - merely a description of a group of symptoms which may have many causes. It is only by thinking about illness in this way that one will find the root cause."

    Please feel free to give me suggestions on others. Maybe we have to come up with our own list. I'll add to the list and organize it better later.
    [This Message was Edited on 07/07/2008]
    [This Message was Edited on 07/07/2008]
  2. marti_zavala

    marti_zavala Member

    This is one of my favorite websites:

    also the treatments page is very good. Most of the big CFS/ME researchers/doctors are listed here.

  3. xchocoholic

    xchocoholic New Member


    Thanks. I added that to the list. Many of us have this and can be helped just by taking some thyroid hormones.


    Thanks. I checked out that website and after reading those stories I was depressed. Most of them have only learned to adapt to this illness. I did that for 15 years and I'm not going back there now.

    I was hoping for a site where they discuss common diagnosises and treatments that have been successful for many.

    I found one yesterday, but I forgot to save it. : ( It was by a holistic Doc though ... I'll look for it ...

    I am starting to wonder if since our CFS researchers are mostly traditional doctors if they are only trying drugs and doing more research ? Since that's what they are trained in ...

    I take that back. I have seen where most of the recommend supplements but have any of them considered the total pkg yet ? It all seems to be a hit or miss proposition.

    For example. I find it interesting that all of them want us to get more sleep, but haven't considered the possibility that toxins other than caffiene are interferring with our sleep.

    IMHO, it would make more sense to eliminate the toxin rather than mask the symptoms with drugs or herbs. Our bodies are trying to tell us something and if we mask this symptom, our bodies will only try something else to get our attention.

    IMHO, our own beloved Rich V. has come the closest so far to getting to the root of the problem. He's treatment may get to the root of all of this.

    I'm afraid to look at what the CDC is recommending ... So far Dr. Myhill seems to be the most helpful.

    I'm not saying this to be harsh. I respect the CFS researchers, but have you noticed that they are MD's ? And the holistic doctors have a totally different view on this illness.

    [This Message was Edited on 07/07/2008]
  4. marti_zavala

    marti_zavala Member

    guess I really didn't know what you were asking.

    That link was a list of researchers mostly. Yes, most researchers are in the traditional medicine arena (who else is going to pay for the studies?) not great but there it is.

    second, is your list a list of things that cause this illness or a list of things the go wrong with this ilness?

    The CDC is paying for real studies now, for physical issues, like the Georgetown Study with Dr. Baraniuk that I went to recently. Things are changing.

    Anyway, if the list is what causes this illness, I would add genetic polymorphisms ( these are not necessarily inherited, they could be damaged from toxins).

    Sorry to make you more depressed.
    [This Message was Edited on 07/07/2008]
  5. xchocoholic

    xchocoholic New Member

    Hi there,

    You got me thinking about this ... Maybe what I've found are just co-existing conditions that contribute to our symptoms.

    I had mild hypoglycemia, Candida and IBS years before getting this DD. I just never realized how these pre-existing conditions could be part of my CFS/ME/FM symptoms.

    My understanding was that all of my symptoms (shakey, weak, digestive problems, ataxia, myoclonus, etc) were from one illness, CFS, and possibly from all the viruses my body was fighting all the time.

    Thanks for the apology, but it's not necessary at all. I feel bad that you felt you needed to apologize. : )

    I just get bummed when I read stories about those who've just learned to cope with this illness as opposed to trying to fix the problem. That was me for 15 years and I can't ever go back there. It brings back some pretty bad memories for me.

    I'm sure you're right that only the drug companies are paying for research and that's why we see so much about drug treatments and this DD.

    Good to know the CDC is paying for real studies now. I'm vaguely aware of the Georgetown Study with Dr. Baraniuk.

    I'm not sure what genetic polymorphisms is. I was more looking for the known diagnosises and their known treatments ...

    I wonder if co-existing conditions might be a better way to put this ???


    [This Message was Edited on 07/07/2008]
  6. Forebearance

    Forebearance Member

    Here's a website by the guy who has cured a lot of people of chronic neurotoxin poisoning:
    Maybe that would be of interest?

  7. marti_zavala

    marti_zavala Member

    Some current researchers are finding that allergies may predispose the body to triggering over.

    Certainly IBS would leave the body in a weakened state. 70% of the immune system is in the gut so that may have been the foot in the door that your trigger needed to take over.

    Not to depress you even more, but there is no cure right now. So, all we have is to beat down the infections that are weakening our bodies even more, support our bodies as best we can.

    Genetic polymorphisms and their research will lead to answers for us. The first real study was in '05. There are now several genetic studies.

    Yaksos work is about supplementing the things our bodies need to bypass the genetic polymorphisms.

    Like we are usually short of B12. But supplementing with cyanocoblamin is not very helpful. But if we supplement with METHYLcoblamin, our bodies use it and we start to get better. In that case, we have a genetic polymorphism in the gene that produces the enzyme that converts cyanocoblamin to methylcoblamin. We can take cyanocoblamin all day long and we don't feel it but we take methylcoblamin and we start to detox and move the toxins out of our bodies. We feel worse before we feel better, but we start to get better.

    Hope that helps.

    added this:
    This is one of the best symptoms list I have seen:

    long and overwhelming but its all there, can't imagine that she left anything out.

    Have you read Dr. Myhill's book (it's free and online) it is really an excellent read and she has good treatments on there.

    [This Message was Edited on 07/07/2008]
  8. victoria

    victoria New Member

    There had been another list but got 'lost', so started another one some time ago -

    just bumped it up -

    lots of good info and sites on it that so many here have contributed....


  9. xchocoholic

    xchocoholic New Member

    I had to google your comments to find out what they were ...

    Hi Forebearance,

    Thanks, but I was thinking that this sounds like GD-MCB. Our inability to detox. Right ?

    "What is Biotoxin Illness?

    Biotoxin and Neurotoxin Illness is caused when a person is exposed to specific toxins. Once exposed, susceptible individuals are unable to clear the toxin naturally, and that sets in motion a biochemical chain reaction called The Biotoxin Pathway, which disrupts normal processes in the body and results in a disregulation of the innate immune response."

    Hi Marti,

    I had to read up on polymorphisms. I finally found this link. I'm not sure genetic research is going to help us.

    I think at this point, there are too many subtypes of CFS patients to have similar genes.

    I think there is a natural cure for CFS. I actually don't fit the CDC criteria for CFS anymore unless I get some gluten. My sleep and nuero problems were from gluten.

    I'm not saying we all have gluten intolerance, but I wouldn't be surprised if there weren't other foods or chemicals that can make us this sick. This would be why we are called the "Canaries in the Coalmine".

    "Inherited Neuroendocrine Gene Variations Contribute to CFS?

    Goertzel, B., Pennachin, C., Coelho, L., Gurbaxani, B., Maloney, E. and J. Jones. 2006. Combinations of single nucleotide polymorphisms in neuroendocrine effector and receptor genes predict chronic fatigue syndrome. Pharmacogenomics 7, 475-83. "

    Hi Victoria,

    I saw your thread today. It's a great thread, but it's not quite what I was looking for though. I was looking for those diagnosises that are common for those who actually have CFS/ME/FM. Not other diagnosises ... But your's is a great thread for those who don't have a confirmed diagnosis of CFS.

    I've seen these other diagnosises listed by several researchers. Food intolerances is mentioned by most, if not all of them.

    Dr. Myhill is the one who pointed out that most of her patients have chronic hypoglycemia. She recommends the Paleo diet. The article is in the PH library.

    Orthostatic intolerance is another common diagnosis. I found a great article by John Hopkins on this. They recommend salt loading then excercise and then meds if needed.

    Dr. Cheney has info about the heart problem. I'm not up on what he recommends for this though ...

    That's as far as I've gotten with this though.

    More or less, I'm trying to pull together a list of common diagnosises found by all the researchers. Some of these have treatments given too.

    I've found all of these by trying to identify my symptoms, researching what might be causing those symptoms and then researching CFS. I really lucked out when my digestive tract gave out on me and I realized how many of my symptoms were from my diet. Otherwise I wouldn't have looked at CFS this way.

    I started looking at dysautonomia the other day because it looks like my BP has normalized and I don't have OI as often now. But I still have to lay down every few hours. I have all the symptoms of dysautonomia and this is common in PWCs, but I haven't had a chance to look for a treatment ...

    Time for bed. I hope this makes sense. I've been on a strong detox diet today ...

    G nite ... Marcia [This Message was Edited on 07/08/2008]
  10. Forebearance

    Forebearance Member

    Hi Marcia!

    On that biotoxin website, when they say a person can't naturally clear a toxin, I think they are referring to the person's HLA-DA genotype.

    I had this genetic test done and found out I have one genotype that makes me unable to naturally clear mold toxins. That's how I got into trouble when I was exposed to them.

    I think the GD-MCB theory is a different way we may be unable to detox things.

    Hey, have you ever read "From Fatigued to Fantastic"? Dr. Teitelbaum wrote it and he basically gives a list of all the different things that can go wrong in CFS and then lists possible treatments for them.

    Reading that book led me to getting my hormones tested and I started taking a small amount of many different hormone supplements, which helped a lot.

    [This Message was Edited on 07/07/2008]
  11. victoria

    victoria New Member

    The things listed above are mostly, if not all, on the other list too. They're all things that need to be considered as playing a part and, if so, need to be treated. IMHO, a 'confirmed' case of CF/FM doesn't preclude anything being also present, or even on one actual basis &/or more.

    I haven't seen anyone here yet that doesn't have a complex list of complaints in general anyway... at least over time.

    CF/FM/ME is a very complex disease, as is self-evident by the fact that there's no one protocol that helps everyone.

    I realize that this could open a can of worms to speak, but, it's something I've noticed often here - there's a division between those who feel that we have a compromised immune system for one or more reasons, or that it's caused by maybe one distinct problem (be it bacterial or viral or __).

    it seems like those who do see improvement do find it by generally working on "peeling off the layers of an onion", in fact I believe some noted CF/FM/ME doctors & researchers have referred to it all that way. (Sorry I can't remember exactly whom, now... on the fly, on the move 2,000 miles away in a few days...)

    all the best,

  12. xchocoholic

    xchocoholic New Member

    Hi there,

    I just posted an article on how our mitochondria DNA are altered by toxins.

    I'm not completely sure this applies, I'm a newbie to the medical jargon, but I have read other studies that say our DNA can be altered ...

    I haven't read Dr. Teitelbaum's book yet, but I've been researching this DD from a diet / food angle and I haven't seen anyone else doing this. And this research takes a lot of time and brain cells. ; )


    Hi there ... This is why I didn't post to your thread. You asked us not to disagree with you and I disagree.

    Your list contains an extensive list of ailments to consider if you have CFS/ME/FM and mine is a list of co-existing conditions typically found in CFS/ME/FM patients.

    From what I've seen only the researchers have access to this info as they are the one who see the most patients with this DD.

    In this thread, I'm only interested in what is COMMON with CFS/ME/FM patients.

    For example. If you get a case of sun poisoning you will have a "complex list of complaints" but if the ER doc doesn't consider the fact that you look like a lobster, he'll miss the correct diagnosis.

    I no longer think CFS/ME/FM as a complex disease. Actually, I don't think of most diseases as being complex.

    Sure if you consider all that can go wrong it is, but not if you look at it from a digestion / nutritional deficiency angle. Which is where I've been coming from since I started looking at this DD.

    Nutritional deficiencies lead to all kinds of serious ailments. If you google vitamins or nutritional deficiencies you can see this.

    I don't know about opening a can of worms. I'm only trying to get handle of this DD for myself and anyone else who may be interested in what I've learned.

    For what it's worth though I believe we have a compromised immune system which causes us to have high viral or bacterial titers, but in some cases (mine) those titers are just a reflection of an upregulated immune system not a real infection.

    I've seen that those who are "peeling off the layers of an onion", are recovering too.

    Have a great trip ... Marcia

    [This Message was Edited on 07/09/2008]
    [This Message was Edited on 07/09/2008]
  13. marti_zavala

    marti_zavala Member

    you wrote:
    "Your list contains an extensive list of ailments to consider if you have CFS/ME/FM and mine is a list of co-existing conditions typically found in CFS/ME/FM patients.

    From what I've seen only the researchers have access to this info as they are the one who see the most patients with this DD.

    In this thread, I'm only interested in what is COMMON with CFS/ME/FM patients."

    I guess I don't see the difference. But that's okay, more threads with more information is a good thing. Here's what I mean, let's say gluten intolerance is on both your list and Victoria's list. Let's take you as an example. You have the diagnosis of ME/CFS and also you have been diagnosed as gluten intolerant. So, you fix that and you fix your nutritional deficiencies and over time your are better. then either you really never had ME/CFS (you were misdiagnosed) or you are one of the 10% that have completely recovered. Either way, celebrate because it really doesn't matter which one it is.

    If you do fix the gluten but you still have some other issues - like muscle pain, post exertional malaise then you may still have ME/CFS but you are 90% recovered. This means that you have to still monitor the gluten and the
    activity levels or you could relapse.

    Anyway, you don't have to agree, just wanted to throw that out to see what you thought.

    Marcia, is it possible that you are recovering. It does happen. Either full complete recovery (10% of our population) or partial reovery (that leaves you at a high functioning level).

    I hope so. I would take either one at this point.

  14. xchocoholic

    xchocoholic New Member

    (Side note: What I wouldn't give for a better text editor on this board. )

    Marti wrote:

    "If you do fix the gluten but you still have some other issues - like muscle pain, post exertional malaise then you may still have ME/CFS but you are 90% recovered. This means that you have to still monitor the gluten and the
    activity levels or you could relapse. "

    I'm totally recovered nuero and sleepwise as long as I don't get any gluten whatsoever, but if I do I'm down again.
    Even getting cross contaminated from crumbs will do me in.

    Some people with gluten intolerance will get sick form gluten in the air. This is more like a peanut allergy than the experts would like to think.

    I'm not sure what other foods or toxins will do this to me or others. I do know that Febreze and bleach nail me too.

    I'm not 90% if you look at my energy level. I still have to lie down for an hour every few hours and I still can't run errands without getting extremely weak. I have to rest in my car between stops.

    I've been looking at OI/Dysautonomia for this ... and now at mitochondria dysfunction. I have a thread on mito dys that I just started today ...

    I don't quite understand why you used this as an example though. I believe everything we eat or drink plays a role in this illness.

    Our digestive tracts were designed to keep us alive and what we put in them is critical. And if they're damaged we're in trouble, but our digestive tracts can be healed.

    I really don't believe the stats we see on who has healed this illness. They're done by the traditional medical professionals.

    The holistic doctors have been saying all along that this is a nutritional problem and have seen quite a few of their patient heal. We'll never know how many had CFS/ME/FM as defined by the CDC or the Canadian diagnostic criteria.

    I won't consider myself as high functional until I'm able to be upright for more than 3 hours. : ) And even then, I'll need to be able to walk or excercise at some level without feeling weak. (This has to be dysautonomia.)

    Thanks for the well wishes ... Marcia

    PS Have you tried dietary intervention yet ?

  15. marti_zavala

    marti_zavala Member

    Yes, I actually was on a rotation diet long before I got sick with ME/CFIDS. I had severe allergies and I tested positive to every food they had tested me for (rice was lowest reactivity).

    I could not walk in the room if someone was cooking beef.

    I am not disagreeing with you on the nutrition. I totally agree. But I don't think it is the whole picture for some of us.

    I currently am on the Feingold diet, Dr. Blaylock's No excitotoxin diet, I drink distilled water, (tried to produce my own food - I have chickens, goats, rabbits, pigeons and a garden) but this has not been successful. Still trying. I am reducing my chemical exposure - no harsh cleaners, no ammonia/peroxide hair dyes. Started Yasko's methylation protocol - good progress there but slow.

    I think we have to hit this illness from all angles. Also, I just used the 90% as an example. I like Bell's disability scale and I refer to it now and then to monitor my progress. I used the gluten example since it was your issue. I was tested and did not test positive but I really can't digest carbs well due to my pancreatitis so I limit grain products some.

    Anyway, sounds like you are making progress and that is all that counts in the end.

    I think this is a good list and hopefully you'll get more feedback.

  16. victoria

    victoria New Member

    I don't really see the difference in what you're saying and what I'm saying on the "other diagnoses' possibilities" list, sorry. I think Marti is saying the same thing (?)... Many if not all of the things listed by you or that are on the other post are covered by the library here too. sorry if I'm having a hard time understanding if there's a fine difference.

    I just think that we all have more than 1 problem causing and/or adding to our CF/FM/ME... thus my list of things to check out which over time your list will likely look similar to. I've treated many of the same things you have but nothing's cured me yet, just helped and is all parts of treatment... 'almost' everything has helped at least a bit.

    To me that just means I haven't found everything yet. And there may still be one or 3 major causes that will make everything else easier to treat, either nutritionally/allopathically or the body will take care of on its own.

    all the best,