Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Hi : Since right before I was diagnosed with CFS, I started to have issues with my ferritin levels being very low. It is my understanding that ferritin levels relate more to the body's iron stores. My Hct has also tended to be low; being in the range of 32-35 (which as a female makes me anemic). I have seen the diagnosis on my chart of " anemia of chronic disease " . I guess I am wondering if a significant number of other PWCs have low ferritin also and what would be the mechanism of " anemia of chronic disease " . I am currently receiving IV iron therapy (INFED) to build my iron stores back up. This has happened twice. The iron therapy seems to help some when I have gotten it -but not as much as one would expect. I have tried some other things (DHEA x 1 month, Trans-D-Tropin for two months). So far, nothing has really seemed to have much effect on me. It gets discouraging & expensive. Teena On Sun, 05 Feb 2006 10:23:46 -0500 " H. Wish " <orchidwish@...> writes: > My internist, who treats a lot of people with CFS, thinks our > ferritin is usually too low for our good (regardless of the > so-called > reference ranges); perhaps this relates to the unhealthy mis-shapen > red blood cells, impaired oxygen-carrying capability of red bloods, > or actual lysis of red blood cells from one of the many pathogens we > > typically carry; or just the fact the supplemental oxygen seems to > help. Anyway, she's had me taking extra iron in an effort to keep my > > ferritin (not hematocrit, I think) at 50-ish. I realized I ate a lot > > less red meat than perhaps when I was younger, and I am menopausal, > so that would not account for the need for extra iron, but my > initial > ferritin test was on the low side, although I can't recall the > absolute number. > > My problem, which continues to amaze me when people talk of things > that make them feel better, is that -nothing- makes me feel better > so > far as I can tell. I just plateau for long periods. I occasionally > get a little better as when my 'sinus' problem finally got a little > better on Singulair which targets or reduces leukotrienes, since an > ear-nose and throat guy, after yet another round of antibiotics, and > > a trial of a nasal antihistamine spray (which caused me to sneeze > and > my nose to run like a drippy faucet) did nothing for me and a CT > scan > shows my sinuses were alright after all and he concluded my > 'turbinates' in my nose were red and swollen probably from an > allergy > (to what I can't tell - I've had it since August). I've recently > been > taking (in addition to my usual supplements) P5P, taurine, > liposomal > GSH, ATP Peak, TMG, molybdenum, SAMe; B-12 with B6 sublingual I've > taken for a long time. Nothing makes the slightest difference that I > > can feel, whatever number I take of them or combination. I'm always > interested in Rich's comments, but I think I may not be in the > subset > to which they apply. I've taken glucosamine sulfate 'forever' since > I > became sick to help with the joint pain, and it does alleviate it > usually completely. I can also take MSM in any quantity and it > doesn't make any difference that I can tell. I realize some of these > > things need time, but some people report feeling better, as with > molybedenum, almost immediately. I just don't see it. > > >im intersted in knowing if anyone has tested for iron overload > which can > >encourage bacteria ? > > > >Reagrds > >CS > > > > > >all our patients are tested for serum iron, %saturation, ferratin > and iron > >binding None of these are consistantly abnormal in CFS > > > >Joy > >Research assistant to Dr Enlander > >_www.enlander.com_ (http://www.enlander.com/) > > > > This list is intended for patients to share personal experiences > with each other, not to give medical advice. If you are interested > in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Teena, Have you (or your doctors!) ever thought of trying to find the CAUSE of your ferritin being low, and getting low again after your iron stores have been repleted? My ferritin was extremely low (7-range 20-200).Taking iron if your ferritin is low because of a chronic infection will only feed the bugs (the ones that thrive on iron). The only mode of intervention that made it rise significantly was...taking antibiotics, not iron. I rest my case. Nelly Re: /Re: Ferritin Hi : Since right before I was diagnosed with CFS, I started to have issues with my ferritin levels being very low. It is my understanding that ferritin levels relate more to the body's iron stores. My Hct has also tended to be low; being in the range of 32-35 (which as a female makes me anemic). I have seen the diagnosis on my chart of " anemia of chronic disease " . I guess I am wondering if a significant number of other PWCs have low ferritin also and what would be the mechanism of " anemia of chronic disease " . I am currently receiving IV iron therapy (INFED) to build my iron stores back up. This has happened twice. The iron therapy seems to help some when I have gotten it -but not as much as one would expect. I have tried some other things (DHEA x 1 month, Trans-D-Tropin for two months). So far, nothing has really seemed to have much effect on me. It gets discouraging & expensive. Teena Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 There is no doubt that iron security is a part of antibacterial immunity. We keep almost all our iron complexed to other molecules, but pathogenic bacteria are still able to acquire some of it by releasing, then resorbing, iron-binding molecules of their own (siderophores). I have heard from an unreliable source that immunoactivation (specifically, activated macrophages) can cause significant sequesteration of ferritin out of circulation. Please note I personally have no clue whether this is true. But pubmed should be able to tell you. I tend to agree with Nelly that persistent bacterial infection is the likeliest cause for most CFS cases. Many CFSers are greatly helped by antibacterial treatment, tho many are not. Personally, based on my reading of anecdotes, I tend to suspect that a heavy combo regime involving a nitroimidazole drug is far better than, for example, just taking doxy. It seems to me that just taking doxy is rarely effective at all, tho there are a lucky few. > > Teena, > > Have you (or your doctors!) ever thought of trying to find the CAUSE of your ferritin being low, and getting low again after your iron stores have been repleted? > > My ferritin was extremely low (7-range 20-200).Taking iron if your ferritin is low because of a chronic infection will only feed the bugs (the ones that thrive on iron). The only mode of intervention that made it rise significantly was...taking antibiotics, not iron. I rest my case. > > Nelly > Re: /Re: Ferritin > > > Hi : > > Since right before I was diagnosed with CFS, I started to have issues > with my ferritin levels being very low. It is my understanding that > ferritin levels relate more to the body's iron stores. My Hct has also > tended to be low; being in the range of 32-35 (which as a female makes me > anemic). I have seen the diagnosis on my chart of " anemia of chronic > disease " . I guess I am wondering if a significant number of other PWCs > have low ferritin also and what would be the mechanism of " anemia of > chronic disease " . I am currently receiving IV iron therapy (INFED) to > build my iron stores back up. This has happened twice. The iron therapy > seems to help some when I have gotten it -but not as much as one would > expect. I have tried some other things (DHEA x 1 month, Trans-D- Tropin > for two months). So far, nothing has really seemed to have much effect on > me. It gets discouraging & expensive. > > Teena > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2006 Report Share Posted February 6, 2006 Yes I would look into this. Ihad a ferretin of under 20 for years and no amount of iron supplementation improved it but once I treated a major helicobacter infection, which had been silent in me for years before it broke out into an ulcer, my ferritin normalised. These bugs use up all your iron stores and damage the intestines and stop you from absorbing it well aswell Re: /Re: Ferritin Hi : Since right before I was diagnosed with CFS, I started to have issues with my ferritin levels being very low. It is my understanding that ferritin levels relate more to the body's iron stores. My Hct has also tended to be low; being in the range of 32-35 (which as a female makes me anemic). I have seen the diagnosis on my chart of " anemia of chronic disease " . I guess I am wondering if a significant number of other PWCs have low ferritin also and what would be the mechanism of " anemia of chronic disease " . I am currently receiving IV iron therapy (INFED) to build my iron stores back up. This has happened twice. The iron therapy seems to help some when I have gotten it -but not as much as one would expect. I have tried some other things (DHEA x 1 month, Trans-D-Tropin for two months). So far, nothing has really seemed to have much effect on me. It gets discouraging & expensive. Teena Quote Link to comment Share on other sites More sharing options...
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