What Are The Different Subgroups/Types of CFS?

Discussion in 'Fibromyalgia Main Forum' started by Jillian40, Dec 30, 2006.

  1. Jillian40

    Jillian40 New Member

    Hello Fellow Overcomers -

    I am sending out warm gentle hugs to everyone as we enter a new year together. . . with hope, love and the faith of healing and positive changes.

    I am pretty sure that this or a similar question has been discussed here, but I thought with all of the new members (and old alike) on the message board, why not discuss it again in 2007.

    Since doctors and researchers are still pondering this very question . . . what do you PERSONALLY think, based on your own deep personal experience of this illness? What subgroups would you classify us into?

    We DO KNOW that most everyone that comes to this website, does so because of some overlapping symptoms . . . this is what makes us FAMILY and gives us a place to find support and guidance towards treatment.

    But, in the same token, I have met folks on-line and in person, who are some better and some worse than myself. Throughout our posts, there are noticeable differences in functioning levels (exhaustion, pain and activity levels) between us. I am quick to agree that it is helpful that we begin our posts with our diagnoses, like FMS, Disc Disease, Lupus, CFS etc. Equally helpful will be for us to also state if we are bedbound, housebound but do chores, work P.T. or can do errands, work F.T.w/pain & exhaustion, in remission, etc.

    Have we as a group, gained some insights from our pain
    and exhaustion as well as reading and research? I'm sure that we have. So, how do you group us into different subgroups or view our same/different manisfestations?

    The first hypothesis I would personally make is that we all (or most) have the GENETIC predisposition for CFS or FMS. Plus based on fairly recent research, a gene sequence (though not specific gene) has been identified. As with ANY disease, the onset is due to some kind of stressor (accident/injury, virus, chemical exposure, extreme physical/emotional stressor, etc). I don't believe that the onset alone is the determinor of the subgroups.

    Secondly, I would next make an educated guess and say that the genetic element includes the basis of an immune weakness. I believe that all of us, both FMS and CFS, have this in common. I also believe that ALL OF US have the brain hypothalmus dysfunction (also known as neuro-endocrine dysfunction) in common.

    Thirdly, I would then state/guess that all (or a very very high %) of us DO have a high titer of one, two, three or more virusus or bacteria or mycoplasma (which are neither virus nor bacteria). Our stressed out/poor immune systems allows the pathogens to climb.

    My question is, do you think that the actual types of virus/bacterias is where we go our separate ways? Can viruses and bacteria each then manifest our illnesses differently? For example certain mycoplasma are worse or different than other mycoplasma and more common in MS and RA thereby perhaps creating these manisfestations. I've read quite a bit of research done by Dr. Nicolson, PhD.
    He's at www.immed.com I think. His lab does PCR tests
    for many of the 100s of Micoplasma.

    For example, I began with FMS, by itself, for about 3 years, but additionally had really bad respiratory infections (now dx with Clamydia Pneumonia and Mycoplasma Pneumonia). These little critters began to cause incredible exhaustion, lightheadedness, cognitive problems, higher pain levels, almost lost job, slept entire weekends, etc. However, I never have stopped working altogether. I was then dx with CFS at year four.
    I am at year seven now, but have had some significant intervention from a wholistic doctor.

    However, due to not having EBV or add'l infections, (like CMV or HHV6) I personally have questioned the CFS dx. I have concluded from reading posts for the past 3 years or so, that EBV and I'm sure others, is a big part of the CFS bone deep fatigue which causes the bedbound/homebound variety. I don't have this type.

    Does this make sense so far?

    Due to an accurate diagnosis of my main 2 viruses, I have healed significantly from a targeted treatment. (Famvir, clarithromycin for 4 months + T3 (for low thyroid), Bromelain (hypercoagulation), 2 sleep meds, vicodin or menthol pain patches, strict diet, etc.
    My particular treatment continues to need to focus on heart issues, due to C. Pneumonia being the "heart germ" and hypercoagulation, low thyroid and low cortisol which I now take meds for. My sleep issues remain, my pain however is now lower (vicodin 1-2 days a week).

    Am I in remission? I would say, maybe yes. When the "fog" began improving and my naps decreased, I began feeling less fearful and more in control.

    Am I still extremely guarded with my stressors, sleep, not skipping med doses, decreased social stuff, guarded exercise routine for now? Yes, very much so. I went to P.T. for 2 months and now exercise only 20 minutes in the water 2 times a week.

    Well, for those of you who have read to this point. Thanks! It takes me a lot of thought AND WORDS, to explain.

    Now, there are many of you who hang out here in our "shared livingroom" on this messageboard, who also have some good insights. Like how does RNAse-L fit in? Do we all have a form of heart dysfunction or is it type specific? Is my theory too simplistic or just another angle?

    Please do share. There's no right and no wrong answers.
    I'd love to learn from your thoughts too. I wish I were able to answer the question that I posed, but then if I could, I'd get paid the BIG Bucks. Do any of you know of recent research that points to any subgroups?

    Take Gentle Care,
    Jillian[This Message was Edited on 12/31/2006]
  2. Jillian40

    Jillian40 New Member

    for your input.

    Jillian
  3. Andrew111

    Andrew111 Member

    I'm sort of new to this. But my understanding is that chronic fatigue is a syndrome. This means it is an identified group of symptoms for which there is no clear medical answer, let alone subgroups of the syndrome.

    I also see that there are different theories, and not all of them agree. And different treatments, that work for some but not for others.

    But I do think it might be interesting to develop a theoretical model for subgroups, and the tests that usually come out positive for the people in each subgroup. And the treatments associated with these. This would help guide people about which treatment to try first and help focus some of the research.
  4. Slayadragon

    Slayadragon New Member

    Jillian--

    I know an increasing amount about CFS and very little about FMS. I will summarize what I believe/know:

    * I am almost certain that true CFS (as defined by the CDC) has a genetic component.

    * I believe that, like many genetic diseases, CFS tends to be more likely to set in with a trigger incident. Head injuries seem to be especially common. Other common triggers seem to include other injuries, pregnancy/labor, extreme stress, and perhaps exposure to toxins.

    * This explanation is not in vogue, but I believe there may be a virus that acts as a trigger only in those people with a major genetic disposition to the disease. Many scientists believe that a wide variety of diseases (heart disease, obesity, kidney disease, cancer, etc.) that are thought to be caused by genetics and environment also have a viral component. Probably these viruses are benign in most people (which is why we don't know that they exist since they don't seem "contagious") and only cause problems in people with the genetics for it and (often) who are under stress and can't fight it off. However, since the likelihood that anybody's going to find this virus is low, there's not any particular reason to focus on it.

    * CFS patients seem to have weak immune systems. NK Cell activity and Rnase are particular problems.

    * After some reading, it has become clear to me why low NK Cell activity and problems due to EBV, HHV-6 and CMV (and other yet-to-be-discovered herpes viruses) would be related. (I wrote a post on this a while back....I can bump it if you'd like to read it.) I tend to believe that all people with NK Cell activity eventually will acquire and have problems with these, even if they never show up as active on lab tests.

    * There may be other viruses that wreak havoc when NK Cell activity and Rnase (or other CFS sufferers' immune deficiencies) are low. I don't know how soon we can expect these viruses to be found or controlled, however.

    * CFS sufferers seem to pretty much unanimously suffer from the same problems: endocrine deficiencies, allergies (especially food allergies), candida infections, lack of deep restorative sleep, difficulty in manufacturing coenzymes (CoQ10, NADH, perhaps others) as well as other substances (stomach acid, digestive enzymes). There is some propensity with regard to bacterial, mycloplasmic and parasite infections, but I am not convinced that this is as big a problem as the viruses.

    * Some of the above problems may be caused by the presence of viruses or other pathogens in the body. (I am referring here especially to sleep, endocrine deficiencies, allergies, and problems with manufacture of various other substances). It is unclear why (like AIDS patients) CFS patients have such a problem with candida. Apparently this is caused by an immune dysfunction, but I have yet to figure out whet the immune problem might be.

    *****

    I have little information about whether any of this applies to FMS sufferers. I wish that I at least had a sense of NK Cell and Rnase-L activity for this group, since this would give me a better idea of whether at least some of the problems they have are the same.

    If I were going to take a couple of wild guesses, I would suggest the following:

    * Fibro patients' immune systems may be broken in a somewhat different way than CFS patients'.

    * Bacteria may be more of a problem for FMS patients, whereas viruses and yeast may be more of a problem for CFS patients. (There is obviously is some overlap.)

    * I am increasingly convinced that fibro suffferers have more of a problem with toxins than do CFS sufferers. Obviously, toxins put stress on anyone's body and cause any disease to be worse. This is true for CFS sufferers, whose systems are already fragile. I do not believe that the toxins cause CFS or that CFS sufferers can get even close to being wholly better no matter how much they try to detoxify. On the other hand, I think that it is possible that if they didn't have toxins in their bodies, FMS patients' symptoms might be so slight as to be barely noticeable.

    * I believe that if fibro sufferers' problems do have to do with toxins, there is a hereditary component to the problem in that they are more sensitive to them than are other people.


    I'm not fully convinced about any of this, however. My theories keep changing as I learn more information and hear more case histories.

    I'm going to try to find my recent post (i think it's called something like "AV's, Herpes Viruses and the Immune System") and bump it to the top in the event that you want to take a look at it.

    I'm glad that someone else on the board is interested in the theory of this stuff! It's hard for me to try to focus on what to do (especially as I move into more experimental treatments) without one.

    Thanks for your post.
  5. Slayadragon

    Slayadragon New Member

    Jillian--

    Did the FFC do an NKC activity test for you?

    I'm also going to bump up my post on the other immune system tests that I had done at the same time as the NKC activity. (The lab called this group of four tests just "CFS"--imagine that! And I came up very bad on all of them.)

    If you've had anything like them done, please let me know.

  6. Slayadragon

    Slayadragon New Member

    Here's an article that Mikie posted about six weeks ago.

    **

    I found this article on the National Forum website while surfing websites about the latest in CIFDS research and treatments. While I knew that PWC suffer from an abnormal number of chronic infections, I had no idea the extent to which this is true. Formerly, it was believed we suffered from one to seven infections at any given time.

    Love, Mikie

    ***************************************************

    37.5 VIRUSES ACTIVATED IN CFIDS!

    by Gail Kansky

    He's been published, given lectures, worked with the Pasteur Institute on CFIDS and plans a return trip, and is a researcher who is on the cutting edge of research; yet, unless you're a resident of California you may not know his name! Darryl M. See, M.D., is a name every PWC (person with CFIDS) will be hearing sooner or later. Dr. See plans to travel to France again soon to expand his research there. He has no doubt that the main causation of CFIDS is genetic, and then an "environmental trigger" has to come into the picture. He believes that if one can manipulate this disease on a genetic level, it can be cured, and he is already investigating ways to accomplish this task! Dr. See stresses that there is no diagnostic marker at this time and cautions that ones that laboratories offer are not to be trusted. After carefully ruling out all other illnesses, he tries to find out what sub-class the PWC is in and he states that "there are many!" Some tests he includes in his workup are:

    Quantitative IGG
    Natural Killer cell function
    Testosterone levels
    Cancer panel
    HHV6 titers
    Lymphocyte assay

    Although endocrine disorders in CFIDS are important, he believes "it is a secondary...and not a primary cause." A genetic predisposition (he's doing a lot of work in this area) has to be in place. A triggering agent, such as Mycoplasma Incognitus (MI) or HHV6 (human herpesvirus 6) leads to chronic immune activation and disequilibrium which then becomes a vicious cycle. "Our job is to break this vicious cycle so you can get better," said Dr. See.

    While in France, Dr. See found that a typical PWC has "37.5 viruses activated at any one time." [Note: The winter 1997 issue of the National Forum stated in error that the average PWC has 375 activated viruses.] While three markers have been identified there are "many more to find." There is also an allergic reaction to viruses that persists in the body.

    Some of the viruses actually insert themselves into the genome. The result, found by Dr. Vojani (Immunosciences Labs) and others are programmed cell death. He believes this can successfully be treated with glycopeptides and glycolupids. In an average AIDS patient, there are 25 million cells dying off but only one cell out of 1,000 is actually infected with HIV. Why do these other cells not infected with HIV die? They are getting signals from the infected cells! "The same thing happens in chronic fatigue syndrome," explained Dr. See,"but it works in a slightly different way." In the PWC, the white cells that should be at rest are activated and they don't know enough to shut down. However, there is now "really exciting new research in this area that leads to...blocking this."

    EBV (Epstein Barr Virus) initiates only 5-10% of CFIDS cases. Enteroviruses are taking a much larger part (coxsackie, hepatitis A, polio, etc.) and this is Dr. See's specialty. Enteroviruses have recently been found to play a role in diabetes, heart problems, and Lou Gehrig's Disease. Reactivation of viruses causes the Natural Killer (NK) cells to malfunction. He believes people acquire the illness as children, often through roseola, so the PWC is actually all set up for CFIDS and is just waiting for a trigger. He's looked at the viral load of HHV6 in CFIDS and found it in much higher numbers than controls.

    There are three retroviral classifications: oncoviruses (associated with cancer; retroviruses (associated with AIDS); spuma viruses (now discredited as part of CFIDS). His main focus is a class of virus called human endogenous retroviruses. Everybody has these and there's a lot of them, but when he does antigen (protein) tests on membranes, he found "tremendous amounts" in PWCs and they're being "transcribed in PWCs instead of just sitting there." He has published on this.

    In Europe, one team has found the PWC's ATP reserve barely exists. This translates into having no energy left so that the PWC collapses. He's looking for ways to increase ATP. Antioxidants are a help in this area.

    The immune system is complex and it is important to know what category you fall into in this area because the treatment that helps one PWC could actually be harmful to another. He published a study on interferon a few years ago. Interferon boosts NK cell function and kills viruses. Only PWCs with defective NK cell function did well on interferon and their quality of life improved dramatically. Since then, he has done a larger trial that is due to be published in the Annals of Internal Medicine.

    [The rest of this article appears in the Winter 1997 Forum, and includes a discussion of some of the drug and nutritional treatments Dr. See uses.]
  7. swedeboy

    swedeboy Member

    I live in California and I have never heard of Dr. See. Do you know where he practices? I live in the Bay Area.
  8. Slayadragon

    Slayadragon New Member

    I did my good deed for the day and looked up Dr. See in the archives. This is a post from April 2006.

    There are few enough doctors in CFS that it's good for all of us to know what they are doing. Let us know if you find out anything further or decide to see him.

    ***

    Hi, I was looking for info on Dr. Holterf(sp) for a friend and just wanted to tell people that in Fountain Valley there is the Center for Special Immunology. www.csihealth.com. They are a center of excellence. The also take an integrative approach and deal with psychological issues, disability etc. I think they take PPO insurance and medicare. That is where Dr. See practiced before he left UCI and is now with another immunology center in Huntington Beach with Dr. Nicolson.

    For those who want a more pharmaceutical approach, Dr. Bonnie Bock is an infectious disease doctor in Newport Beach who treats CFS. For those like me with a viral component, and not much into supplements, I think she's a good place to start, and lucky me, she is in my medicare HMO plan. I just got my authorization. but i remember 10 years ago she used hyperbaric chambers. She was also voted one of the top 160 docs in Orange County.

    It's sad that those that need it the most can afford it the least. Do we go to these docs and go bankrupt and live where? or as one person said, just rest, which I'm trying Oh, and I was told by Dr. Dorothy Calabrese who is on the co-cure good doc list that there is a lawsuit underway against medicare for preventing people in HMO's from getting the treatment they need by not letting them go outside the group

  9. monicaz49

    monicaz49 New Member

    ive been in card accidents hitting head, ive had surgery to remove gall bladder, ive been pregnant and ive been been through a point in which i had off the chart stress in my life.
    My symptoms started after all these....the only one i still had going on was the stress.
    But...i believe lyme lays dormant for most healthy people. Then if you have traumatic events happen and your immune system allows it...it can show itself and reek havok on your life
  10. swedeboy

    swedeboy Member

    Thanks for the info on Dr. See. I found a lot of info on him at http://www.pro-networkers.com/see_cv.html
    Apparently he was asked to resign from UC Irvine for breaking rules...Other than that he has done so much research, it's amazing.

    I wish I lived near The Center for Special Immunology. Although I doubt I could afford it, unless they take medicare. I'm awaiting an appointment at Stanford University hospital to see Dr. Jose Montoya. Stanford Hospital takes medicare so that's good.


    P.S.

    Hey MCOURTNEY did you ever get a chance to post the four categories of CFS like you mentioned?
    [This Message was Edited on 12/31/2006]
  11. Jillian40

    Jillian40 New Member

    Hello everyone who responded; Lisa, Andrew, Swedeboy,
    Monica and MCourtney. Thanks so much for your input! I don't know about you guys, but it sure empowers me to have a good base of knowledge of the many contributing factors of this (these) illnesses. For me it continues to point me in the direction of antiviral, antibacterial, mitochondrial intervention. Docs on their own, will tend to err on the side of caution (and ignorance in some cases due to lack of specific training in CFIDS) and just treat the symptoms to make us feel better temporarily. But as the patient, we must guide the treatment intervention if we are willing to take more risks and try more experimental routes.

    A special thanks to you LisaPetrison! You sure are good at looking things up and actively sharing what you learn. Are you a researcher in another life? Or just really really determined to effect your future treatments and get to feeling better & stronger? Thanks for providing your theories, some great ideas. As far as the detoxification goes, I believe that we all do have some control over helping our bodies to detoxify, naturally. It can't hurt at least. I'll post more later.

    The article you posted about viruses helped me to see that EBV (Epstein Barr Virus) is less involved, 10-20%, though still a factor in some. So, enteroviruses were mentioned as a perhaps larger or more prevalent factor? I'd like to research this a bit more.

    Have any of you done some reading on this yet?

    I also would think that based on Garth Nicholson PhD's research on mycoplasmas, these are also very significant.
    I believe that his website is www.immed.org His daughter came home from the service with Gulf War Syndrome and then infected both he and his wife. They are both researchers.

    It seems that the first proactive thing that we as patients can do is get a handle on sleep and outside stress effects. Then begin taking as many antioxidants as we can in our foods and supplements. Then, what has worked for me, is to print off CFIDS Docs articles on treatments and research and present these to our Primary Care docs while requesting an intervention or referral.

    Let me go do some more research, to find the article on the gene sequence that was discovered, plus anything else relevant. Then I'll be back in a bit.

    Thanks again everyone for your input!

    Hugs,
    Jillian[This Message was Edited on 12/31/2006]
  12. swedeboy

    swedeboy Member

    Interesting thoery.
    Could you elaborate on your statement "the reason why good doctors dont prescribe RX meds like valtrex is because while they might help a virus they are actually creating more neurotoxins."

    How do valtrex and other anti-virals create "more neurtotoxins?" I am curious because I may be taking anti-virals prescribed by Dr. Jose Montoya. The last thing I want to do is create more neurotoxins.

    Thanks, Swedeboy
  13. Jillian40

    Jillian40 New Member

    I have some input on natural detoxing . . .

    I learned from a good friend who was successful in putting her cancer into remission, that detoxing in the form of coffee enimas and dry or wet saunas are something natural we can do. It requires a few supplies for giving an enema, though once you get the hang of it, the time spent isn't more than one hour.

    The sauna may take a membership to a spa or club however. But maybe some of you may know a friend who has one.

    My friend, was sent home to die, basically, after some serious medical intervention with chemo and radiation. Her cancer had grown back while she was receiving radiation, which told the docs that it was one of the most aggressive forms they'd seen. Her mom and sister had died with a similar form of cancer. She went to a specialized inpatient facility where they taught her to give herself coffee enimas among other things, like a very strict fresh food diet (organic).

    She now gives talks to large and small groups, of which I was fortunate to be a member of one.

    I have been on a fairly strict fresh food diet for about a year, basing much of it on Jordan Rubin's book "Maker's Diet" and "The Great Physician's Rx". I have also just begun the coffee enimas.

    I believe that these two things are crucial in supporting our bodies to eliminate toxins. It is also recommended that a person do a one day fast each week, to give the body time to rest and not be overloaded with processing food 7 days a week. It's a fresh juice or water fast. (Not bottled juices). This is what she does herself. She's been cancer free for over 4 years.

    Let me know if you have any questions about it.

    Ciao,
    Jillian[This Message was Edited on 12/31/2006]
  14. swedeboy

    swedeboy Member

    When you mention saunas, are infrared saunas included? I have been looking into infrared saunas (the portable ones) and I am curious if they help in the detoxification of cfs people? Also what is an appropriate amount of time (10,20,30 minutes at a time?) one should spend in a sauna?
  15. Jillian40

    Jillian40 New Member

    I've just begun doing saunas this month.
    I can tolerate wet ones better, but only for 10-15 minutes.
    So, for me it depends more on how I'm feeling than on any
    specific numbers of recommended minutes.

    I've just begun seeing posts on infrared saunas. You surely
    know more than me about this. How much do they cost to purchase? What do they do specifically being infrared?
    Is that the type of heat element? Is it supposed to better penetrate muscles?

    Let me know more.

    Take Good Care,
    Jillian
  16. Slayadragon

    Slayadragon New Member

    Jillian--

    In my previous life, I did Ph.D. training as an academic researcher. (Marketing sounds like it's kind of a pretend Ph.D., even to me, but the program was extremely heavy lifting with regard to how to go about putting together concepts and forming/testing hypotheses.)

    I thought that immunology was going to be really hard, but it turns out that it's less confusing than I thought. It's not as complex as social psychology (by a long shot) and there's a whole lot more information about it than there is about neuropsychiatry (which was the last field I tried to master due to trying to fix the manic-depression that followed a head injury and contributed to the CFS development).

    I feel like I'm starting to get a bit of a grip on this, which is kind of reassuring. If you have time, please look at my post (something like "Herpes Viruses, AV's and the Immune System") and let me know your thoughts. I've pieced it together from a bunch of places (rewriting it in plain English) and put in some of my own questions. It's a pretty compact and readable summary (unless you have severe brain fog at the moment!) and so it would be interesting to get comments.

    It's very strange that I had to piece this stuff together to figure out what these particular AV's are doing and why they're appropriate for us. Someone else must have done this work, but they have yet to share it with us.

    Jillian, you seem to have mostly fibro. Have you had much exposure to toxins in the past? Did the FFC tell you that your NKC activation is low?

    My thoughts about toxins being responsible for fibro are prompted by a) observations on this board and b) evidence that fibro is especially common amongst blacks and--especially--Hispanics. There is no reason why these two populations would have the same genetic propensity, obviously. So it seems that the cause has to be environmental.

    It could be something like poor diet, I guess. However, the fact that blacks and Hipanics frequently live in big cities (where pollution is high) or in rural areas (where they may be exposed to pesticides) seems to me more likely.

    I did a survey of people just with fibro (not CFS) at one point about toxins. (This is before the chitchat group was put into place, and so there was a bigger diversity of people here.) I was _amazed_ by the stories that some of these people told. Even if only the outliers on the board responded, it still makes me think more strongly that chemicals (especially pesticides) may be a key problem.

    I will try to find that survey and bump it up to the top too.

    Please do take a look at my AV's/Herpes Drugs post when you have time. I'd like to hear your thoughts.


    McCourtney & Swedeboy--

    If you have detox ideas, I'd be delighted to hear them.

    It is indeed my impression that all of the AV drugs are liver toxic. I actually started to feel that symptom (I sort of have an idea of what it's like) during my first week on Famvir, and quickly added some liver support. I seem to be okay on that front now. Definitely I would recommend it for anyone taking these drugs.

    The killing off of lots of viruses (in the manner described in my post on AV's) certainly creates lots of toxins as the dead "bugs" are washed out of the system. I'm of the impression that this is short-term though.

    Obviously, any medications introduce foreign elements into the body. I think that CFS and FMS sufferers should be extremely careful not to use too many drugs (although that's easy for me to say since I don't suffer from the excruciating fibro pain that others on this board do).

    I'm not convinced that drugs in general have been a key exacerbator for me, though. My CFS related symptoms got neither better nor worse during or after a period in time when I ran through a whole bunch of drugs (something like 35 in one year) for my mood problems. Some of those were heavy-duty drugs too. I've been on only two drugs (the anticonvulsant Lamictal and the benzo Klonopin) for several years and would prefer to keep the numbers that I take low if at all possible. In truth though, it seems to me that effects from drugs are the least of my problems (which I listed in my post above....e.g., yeast, endocrine deficiencies, etc.)

    Again, any info you have on getting rid of toxins would be extremely appreciated....
  17. swedeboy

    swedeboy Member

    I'm still learning about them. But I found some on ebay for around $200-$300.

    I got this info on wikiapedia
    "FAR Infrared Sauna (FIR) heat provides all the healthy benefits of natural sunlight without any of the dangerous effects of solar radiation. The invisible and very safe far infrared heat produced by an infrared sauna is able to penetrate well below the skin, which enables the body to sweat at temperatures of 110 - 140 F (much lower temperatures than conventional saunas)."

    "Infrared heat penetrates your body 1.5 to 2 inches deep, causing 2-3 times more sweat, and shakes out 300-500% more toxins...more even than working out or using conventional saunas. An infrared heater heats only 20 percent of the air, leaving over 80 percent of the heat available to directly heat the body. Thus, an infrared heated sauna can warm its users to a greater depth and more efficiently than a conventional sauna, while enabling them to breathe easily."

    The portable ones allow for the person to have their head sticking out.
  18. Slayadragon

    Slayadragon New Member

    I did a couple of coffee enemas at one point, although I'm not sure how much they did for me. Unfortunately, I now have a deadly rubber/latex allergy and so would have to buy special silicone supplies to do any more enemas. We'll see if I get around to that one.

    I used a steam room on vacation and felt so good after I used it that I decided to include a steam room component when we did our bathroom renovation. I really like it and do feel that it's detoxifying. I use it several times a week for maybe 15-20 minutes. Following with a good scrub is important, of course. And I always use a cool water rinse since I get a little lightheaded otherwise.

    When I mentioned to my doctor that I was putting in the steam shower, he said that would be useful but that an infrared sauna would be better. My bathroom renovation was already underway, and in any case I'd have to be very persuaded that something that took up that much space in my house was going to be really effective. (The good thing about the steam shower is that it takes no extra room at all.) I did not ask him why the infrared sauna would be better. He's very knowledgeable though, and so there must be at least some evidence behind it.

    You're probably right about the juice fast being a good idea. Mostly, digesting food takes so much energy that it's good to give our system a break, I think. (That's why elderly people who are underweight and eat less calories than they should live longer, supposedly.) I have a juicemaker and should use it more than I do. Perhaps I'll do that soon.

    I've got a couple of colonics recently, in order to get rid of a yeast herx. (This was on my doctor's recommendation, and it worked wonderfully.) Colonics are somewhat exhausting for me, but I'm definitely inclined to do more for the detoxifying purposes once I get past this AV herx. I've tried to follow them with wheatgrass juice, which seemed like a good thing to me. I have to go a bit out of my way to get to Jamba Juice for the wheatgrass, but it seems worth it when I do. Apparently you also can get wheatgrass juice frozen, although I don't know if that would be as good.

    I've realized recently that my colon is in terrible shape, and concluded that this has been the case ever since childhood. I do not think this is a primary CFS problem per se for me, but if it were in better shape perhaps I would feel better in general. That is on my list of things that I am going to focus on in the fairly near future.
  19. Slayadragon

    Slayadragon New Member

    I bumped a post called "Fibromyalgia Patients: Where Did You Grow Up?", which is the survey with all the toxins in it. Pretty amazing stuff.

    Not sure what that "something better" for New Year's Eve would be. I was going to go to Dream Girls, but then decided it would be too crowded and thus better to wait.

    I do still go to parties on occasion, but there has to be a very good reason indeed. (And my husband is far more hesitant than I am....)
  20. swedeboy

    swedeboy Member

    Detox:
    I wish I knew the magic potion for eliminating toxins.

    Right now I am juicing daily. My juice recipe is on the moderators juice thread. I try to keep it as low glycemic as possible to avoid the risk of candida growth. I only add a sliver of apple, to help the taste. I have heard that many vegetable juices can be detoxifying.

    Some of my juices for detox are cilantro for mercury and Dandelion Greens for the liver. I also take 3 grams of chlorella to supposively bind with the mercury if the cilantro is really detoxing it. (I gathered some of this info from rich carson's post on mercury detox.)

    I would like to get an infrared sauna so I can do sweats for toxin elimination. Before I took Diflucan and nystatin my body odor was very bad after sweating in the bath tub. So I assume that sweating was eliminating some toxins.

    I took dilfucan and nystatin daily for several months, on 3 ocassions. I read your comments on diflucan and it was very informative. My body odor has never returned anywhere close to how it was before, I smell much better now, hehe, knock on wood of course.

    So for my toxin elimination, I currently juice, and I would like to get an infrared sauna to do sweats. Right now my only sweating comes in the form of showers,(I don't have a bath tub anymore) but I do get very light headed after a few minutes of a "hot" shower, so I can't do it very often.

    My supplements include: TransFactor (for 6 weeks now, with no noticeable benefit), NADH (for a couple of weeks, with no noticeable benefits), Alpha Lipoic acid (ALA) (on and off for years, no noticeable benefits), probiotics (same as ALA) , Raw Garlic (few weeks, no benefits noticed), Multivitamin (years), B-12 (couple of weeks, no benefits noticed), Omega 3 oils (1 year, may help slighty with depression), cal/mag (same as ALA) I am sure my supplements are helping in some way I will notice in the future, like preventative ways.

    Rx drugs: Flexeril 5-10mgs few times a week, Ocassional Ambien, and Desipramine 100mg daily