CFS/FM: Why We Get Fat

Discussion in 'Fibromyalgia Main Forum' started by Slayadragon, Jul 14, 2008.

  1. Slayadragon

    Slayadragon New Member

    Today I was talking with my Chicago CFS doctor, Keith Berndtson M.D. He is giving me slow IV pushes of Vitamin C twice a week, which gives us about 40 minutes a week to talk about whatever.

    I have been using the time to talk primarily about toxins, and over the past few months he's become increasingly excited about the topic.

    Here is a summary of today's discussion. Some of the ideas are mine and some are his.

    This is purely theory generation, and so thoughts are most certainly welcome!!!


    1. Toxins of all sorts are stored in the fat cells of the body, which is the place where they cause the least trouble. (They still do cause some trouble, especially by disrupting the endocrine system. It's better than having them elsewhere though.)

    (This point is pretty accepted by mainstream medicine. The rest is much more speculation.)

    2. If too many toxins are stored in the body, the fat cells get overloaded. The system then has to decide where to put them. This is a difficult choice since there is no good place to put them!

    3. One way that the body compensates for having too many toxins for the fat cells that exist is by making more fat cells and hanging on tight to the ones that have already been made. While there certainly are negatives associated with being overweight/obese, these may be outweighed by the positives of having the toxins tucked away in a more safe place.

    This is the basic theory. I'm not certain that all medical professionals buy into it (especially point 3), but my impression is that most of these folks would consider it to be at least plausible.

    Following are a few basic observations that might follow from this:

    a. Many people (or at least of those on this board!) are becoming increasingly convinced that CFS patients have a lot of toxins. These include some toxins that go through the methylation/glutathione pathway (such as prescription drug residues), biotoxins (made by lyme/mold/dinoflagellates/etc.) and possibly heavy metals. One would expect that they might gain weight and have a hard time losing it even with diets that in theory do not supply excess calories beyond which they are burning. To the extent that they are able to eliminate these toxins, their excess fat should start to decrease (provided that their diets are okay.)

    b. FM sufferers often are overweight. To the extent that their diets are not excessive in calories, this suggests that they may have a lot of toxins in their bodies as well. Unfortunately, most FM sufferers here have not seemed to respond to supporting methylation, and I've yet to see evidence that biotoxins are at the root of their illness. What I have seen (see my post "FM Sufferers: Where did you grow up?") is that they may have been exposed to a disproportionate amount of pesticides and other chemicals with xenoestrogenic activity. Xenoestrogens are very difficult for the body to eliminate, and so keeping them tucked away in fat cells may be the most functional thing the body can do to deal with them.

    c. Overweight is not just a problem with CFS/FM sufferers, but with Americans overall. This is generally blamed on poor diet and lack of exercise, and perhaps there is some truth in that. However, people in the past have eaten high-calorie diets and gotten little exercise without gaining huge amounts of weight. (I grew up in the 1970s and don't recall kids eating that healthfully or necessarily exercising much.) Maybe what "poor diet" here means is one that is chock full of is the case with all fast food and processed food, and even much food at "nicer" restaurants. Those toxins plus all the other ones in the environment logically are causing people to have a higher toxic burden to get rid of. To the extent that the detox system can't keep up (or, as with xenoestrogens, isn't designed to eliminate them), more fat cells may be created as storage places.

    d. It is often reported that certain groups (blacks, Latinos, lower classes) are especially likely to be overweight. This is blamed on poor diet (again, too many calories!) and not enough exercise. Maybe it's that they are carrying more toxins than the average person and thus need to compensate by building more fat though. Certainly they're more likely to be privy to things like pesticides and chemical dumping (either because they work in/near agriculture or live in areas that are not policed by vigilant town councils). Heavy metals may be more prevalent (e.g. arsenic/lead/uranium remainders from mining on Native American reservations, lead paint in inner cities) in those areas. Not being able to afford as much fresh food (never mind organic!) puts them at a disadvantage with regard to toxicity no matter how carefully they try to select from the store shelves foods that will meet rather than exceed their supposed caloric needs.

    e. Concern amongst medical professionals is that people who carry fat around the lower part of their body are especially likely to have health risk problems. If the reason there is excess fat is in order to store toxins though, it makes sense that the fat would be stored low on the body, away from the organs. If that's the case, encouraging people with fat in these areas to lose weight may be precisely the wrong thing to do, since the toxins then will be dispersed into the body and cause more damage than the fat itself was doing. (Correlation is not the same as causation!!! Medical professionals way too seldom make any effort to look for hidden third variables that are causing both of factors that seem to be connected. This is especially true when one of the variables is either "fat" or "depression".)

    f. My understanding is that anaphylactic allergies (such as those to peanuts or latex) have been on the rise in recent years. This type of allergy seems to result due to the misidentification of a benign substance (or at least apparently benign substance) as a dangerous one. The body is super-primed to look for these toxins, and they are encountered infrequently enough that the body can go on red alert when it encounters them (e.g. Keep them out! Keep them out!). The use of the word "dangerous" substance here is code for "toxin." (If the body thought it was a pathogen, it would be the immune system going to work.) Insofar as the body already is overloaded with toxins, there is a strong motivation for it to keep out any additional ones....especially if they've been defined as really bad. It thus makes sense that as our bodies' toxic burdens have increased, the incidence of anaphylactic reactions might go up.

    g. Dr. Shoemaker's work suggests that the reason that some people do not get well from mold poisoning even after they get out of the moldy environment and use various substances (such as cholestyramine) to get the toxic materials out of the system is because their bodies maintain an anaphylactic type sensitivity to the mycotoxin. This is the same experience that we've got going on with the allergies, except in this case the substance actually is dangerous. And while one more molecule of mold poison isn't going to push anyone over the edge, the body's not taking any chances. (This is especially the case for someone who's been subject to large amounts of mold poisoning for a long period of time. The body most certainly has figured out that it's something that is really really _really_ bad for it.) If there's no room in the inn (fat cells) to tuck away any more of this bad stuff, raising the security alert up to bright bright red makes perfect sense.

    h. My one ray of hope here is that if the above is the case, perhaps reducing overall toxic burden in the body (e.g. leaving some of the fat cells "open" to accepting new visitors) will cause the body to relax a bit when it senses a mold particle. I would imagine that it would never be happy to see one and always would send a strong message to get away from it, but perhaps not a strong enough one to knock me flat for several days after the encounter. (All that hyperactivity is exhausting to my body, and also causes a negative chain reaction downwards that takes time to be put back into place.) My fervent hope is that by getting as much bad stuff of all kinds out of my body (through methylation, biotoxin removal, whatever odd chemical the Limu seaweed product I'm using is removing, extremely high-dose Vitamin C), my overall chemical load will decrease and I won't be faced with the choice of either living in a tent in the middle of nowhere (where no black mold exists) or not being wholly well.

    I told Dr. B that I thought this was a full day's work and that we should be really proud of ourselves. And this actually would be more than a full day's work for most Ph.D.'s, even fully functional ones (e.g. no CFS). Unfortunately, Dr. B had six hours and 12 more patients to see. (Most doctors would have about 40 more patients to see, but his practice is structured differently because he specializes in CFS.) And then we wonder why M.D.'s aren't open to discussions of new ideas!!!

    Thoughts of any sort would be most welcome, please.
    [This Message was Edited on 07/14/2008]
  2. Mikie

    Mikie Moderator

    It never used to matter what I ate, although I ate a healthy diet; it mattered how active I was. When I got sick, I could no longer exercise as I used to--long workouts at the gym. There are times now when I can still work out a wee bit but sometimes, it can cause a real setback. That was the case recently. I only stretched a bit and lifted some light weights. Even though my FMS symptoms are pretty much reversed by the Guai Protocol, I had a painful flare.

    I am suffering relentless allergies right now and that may have had an effect. Also, I am detoxing/purging, whatever. Today, I am outright Herxing from the Doxycycline I've taken to prevent the allergies from giving my mycoplasma infection an opportunity to reactivate. Oy! With us, it's always something.

    I take the methylation supps and they do cause some pretty severe detox with very smelly sweating and diarrhea. I hope toxins are being purged from my body. Perhaps when we get the toxins under better control, our weight will normalize. I hope so.

    Strange sidenote: Whenever our county sprays for mosquitos and I come into contact with it, I have a remission--just the opposite of what one would expect. Our county is still using an old insecticide which has been banned by other counties in FL.

    Again, thanks for this most interesting post.

    Love, Mikie
  3. Khalyal

    Khalyal New Member

    I've been formulating this train of thought myself. Nice to see it laid out so concisely! Very well put, and much appreciated, Slayadragon!

  4. marti_zavala

    marti_zavala Member

    Yes, I totally agree that the weight gain is to keep us safe from increasing amounts of toxins that are backing up and not being removed.

    Also, weight gain from malabsorption, low stomach acid, low digestive enzymes, insulin imbalance.

    Also, thyroid and adrenal imbalance (thyroid can be knocked out of comission from high mercury levels).

    Good work! Sounds like a great doc. He's a keeper!

  5. Slayadragon

    Slayadragon New Member

    I hate to say this, but there have been a few times since I've started avoiding mold that I've gone to places that have had a lot of it.

    (I can tell because my blood pressure increases from its usual 105/70 to as high as 150/95, my pulse increases from its usual maximum of 80 to as high as 165, I feel nauseated and spacy, etc.)

    What I've found is that I feel pretty weird while I'm in those places.

    If there's just a small hit, I feel really tired almost immediately afterwards.

    If there's a big hit, I tend to feel great for a while afterwards. Happy. Then I crash into a coma for a few days, unfortunately.

    I assume it's my body making endorphins. Isn't that why people sniff bug killer?

    (Actually, there have been people on the board who have reported sniffing bug killer on purpose and feeling better. I and others advised them to stop, but I don't know if they listened.)

    Do you think that's what's happening to you?

    [This Message was Edited on 07/14/2008]
  6. acer2000

    acer2000 New Member

    If I had to guess, its probably because your adrenal glands fire, making cortisol and reducing inflammation temporarily, and then they crash. Not sure, but I think shoemaker covers this in his book... mold->ACTH->cortisone->body attempting to reduce inflammation caused by immune reaction to mold toxin. In general, short bursts of steroids tend to make people feel better... I bet if you did a prednisone taper you'd feel the same. (Not that I'd suggest that...)
  7. mbofov

    mbofov Active Member

    I (and probably most people on this board) can personally vouch for a toxic burden in my body. Almost everything I try that is supposed to help me causes a detox reaction first, and often it's so hard to handle that I just can't take whatever is it is that is supposed to be so helpful (e.g., cayenne (for the heart and just about everything in the body), chlorella, apple cider vinegar, Lugol's iodine, Cellfood, and many others I've forgotten now)

    I'm still hoping that the methylation protocol has the magic key to boosting my body's ability to detox.

  8. Forebearance

    Forebearance Member

    Thanks for sharing all your theorizing, Slaya!

    Yes, arosenbl0, Dr. S covers that in his book and Dr. Cheney said something similar in his lecture on CD. Steroids feel so good they can cover up how poorly a person is doing.

    This all sounds consistent with what Dr. Shoemaker says.

    One question, though. Dr. Oz says that fat around the midsection is far more dangerous than fat in the lower body. I have heard that statement from other places, too. Because fat near the internal organs affects them more. I was under the impression that fat in the lower body does not reduce life expectancy the way fat in the tummy does.

    I remember Oprah saying "Yes!" when she heard that. lol

    This is how I explained Dr. Shoemaker's fat theory to my mom (I doubt she'll ever make it through his book):

    Toxins are like illegal aliens that sneak in and then cause trouble. The body has no way to deport them, so at least it can put them in jail. (Fat cells) When prison overcrowding happens, the body has to make more cells.

    The nation's obesity problem could also be partly caused by lots of people with insulin resistance or pre-diabetes. Maybe the toxin overload and the trans fatty acids in food and the insulin resistance all combine to make people fat.

  9. Mikie

    Mikie Moderator

    Your explanation makes sense. I never realized people sniff bug spray--Aack! Raid makes me sick just to get a quick whiff. It's only the nasty stuff the county uses which actually causes a remission. I don't really crash afterward but the remission is short lived.

    The Herx from the Doxy is winding down today. The heavy rains have washed the air clean of pollen and dry mold spores, so I'm feeling tired but better. Of course, the mold will only increase with the rains and when they dry up, the spores will be a blowin' on the wind.

    I really do hope the MCP helps us to normalize so that our bodies can better handle life.

    Thanks again.

    Love, Mikie
  10. mars_xmu

    mars_xmu New Member

    Some folks have the fat gene, other folks not. While others eat for comfort. Kids and young adults can eat junk food and it does not effect them much due to the fact that all systems in body function at optimum level, until you reach about 35 then it is downhill all the way.
  11. Slayadragon

    Slayadragon New Member

    Hi Mikie,

    Oh, don't you live in one of those Florida towns that got hit by a big hurricane a few years ago?

    Apparently New Orleans is full of toxic mold spores inside and out, due to the building materials that quickly got covered with dangerous molds after Katrina knocked them down. Apparently those "plumes" (clouds of toxic spores) are increasingly common and don't easily dissipate.

    I am presuming this happened after all the flooding in Iowa too. I wonder if they'll blow all the way to Chicago. Plus I have a vacation/rental condo at a resort on the Iowa/Illinois border, and now I wonder if it ever will be a good idea to go there again.

    Do you feel better if you are able to get away from your current town and go somewhere that's not been hit with all that water?

    I also seem to recall your having had a lot of mold (it sounded like black mold) in your shower at one point. That makes me think that perhaps mold toxicity might be one of your issues (though not necessarily the main one....mold is not an all-or-nothing cause, even in my mind!)

    I'm wondering how you would do if you took the Visual Contrast Sensitivity test. It seems to me pretty accurate and costs $10 to do online. If you came up positive it wouldn't tell you whether you had lyme or mold (or maybe something else, like dinoflagellites from the ocean) poisoning, but at least it would be a start.

    Rich says that the MCP doesn't detox biotoxins, and my experiences suggest that he's correct. Addressing them with other means (such as cholestyramine or brown seaweed) might allow you to get improvement beyond what you would with the MCP alone.

    Have you ever done intravenous Vitamin C? If so, what was your experience? It's my impression that this was a more common treatment quite some time ago, and so I thought that maybe you'd have heard of it.

    Best, Lisa
  12. Slayadragon

    Slayadragon New Member

    There are lots of hypotheses about why people get fat. Probably many of them have truth in them.

    I was considering here a) why CFS and FM patients are especially likely to get fat (apparently even when they do not eat excess calories to meet their expenditures) and b) why people (and Americans in particular) are so much more likely to be fat than were people a few generations ago.

    Kids and young people today most certainly are fat! Back in the 1970's, kids that were even a little fat were outcasts. Now it's the norm!
  13. pluis

    pluis New Member

    Sorry but this post is a little long for me to read!!

    Is this true that FM patients are often overweight?

    I don't think that especially CFS people get fat.

    Leave the dollars for the hamburgers at home, go to the famers market!

    BILLCAMO New Member

    Have problems with weight gain. Here's a couple of more things that contribute to this problem.

    1) Because of pain , fatigue , etc. , we just aren't able to do as much as we'd like to do. Therefore , fewer calories are burned.

    2) If you have cravings and "feed them" , the extra sugars and other things add to weight gain.

    3) We forget what , when , and how much we have eaten.

    Blessings ,

    [This Message was Edited on 07/16/2008]
  15. Mikie

    Mikie Moderator

    We got hit almost directly by Hurricane Charley in 2004. I was in a fetal position in my master bath, under a small mattress. I thought for sure we would lose the roof but it held. In fact, my unit only had a very small leak from the shingles which were blown off the peak. The repairmen were here the next day to seal it off. I made sure the small brown stains in the ceiling were able to dry. I never let the humidity get high in my unit. If it's humid, the A/C is on.

    I talked to the county mold expert right after Charley. He told me that as long as the little leaks dried and I never allow the conditions for the mold spores to reactivate, all would be well. He is right. I don't have a mold problem in my condo. We did not get the surge flooding which happened in LA during Katrina. Our damage was mostly wind driven. Once the wind causes damage, the moisture from the rain can cause problems. We were very lucky. Just after Charley, we were hit by Ivan. My daughter insisted I come up to Atlanta to get away from it. It followed me up there and I left just before it hit Atlanta. It did some damage to my daughter's roof. I drove down the East Coast as Ivan was going up the West Coast.

    I had a moldy shower stall in my master bath in CO. It was making me very sick. I had no problems after it was fixed.

    Haven't tried IVC.

    Thanks for all your feedback. I am healing but it's extremely slow. It will be interesting to see how the MCP works out. It will just take time. I know it's detoxing something in my bod and that is good. I believe modern life exposes us to a lot of chemicals and toxins and everybody probably carries some toxins in their bodies. Healthy people just seem to be able to overcome them. With us, I think there is a "breaking point" which causes us to finally collapse.

    Again, thanks for you input.

    Love, Mikie

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