Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 " Is this hokum, or is it a medically documented phenomenon. Thanks, Heidi Kay " Are you talking about the CFIDS/FMS or the yeast problem? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Thanks, Ursula. I am referring to some literature I read on the web claiming that overgrowth of yeast can cause CFIDS/FMS symptoms. I was intrigued by it, since has had thrush in the past and also has what appears to be a fungal/bacterial sore on her lip right now. I have found countless websites promoting gluten free diets, and detox products for people with CFIDS/FMS and related disorders ( was dx'ed with Hypermobility Syndrome). Some of these " testimonials " (on CFIDS, FMS sites too) say that elimination diets and nutritional supplements (acidophillus/yogurt) can " cure " or substantially improve symptoms, and that CFIDS, FMS etc. I also found a website denouncing Candida (yeast) as an overblown hoax diagnosis just to sell nutritional supplements. Heidi At 01:27 PM 10/14/2002 -0400, you wrote: > " Is this hokum, or is it a medically documented phenomenon. >Thanks, >Heidi Kay " > >Are you talking about the CFIDS/FMS or the yeast problem? > >Ursula Holleman >Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes >Insipidus, colonic inertia) >http://members.cox.net/maceyh > >Immune Deficiency Foundation - Peer Contact for GA >http://www.primaryimmune.org > >/ > > > >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Heidi - CFIDS is a diagnosis that I hold with about a grain of salt (this being my personal opinion and nothing to do as being moderator of this group). These people have fatigue that cannot be related to any verifiable medical diagnosis or testing and have began to believe that something in their immune system must be at fault. Lab work that shows a true verifiable immune dysfunction (the ID of CFIDS) is a primary immune deficiency (PID) and fatigue is a part of having a PID. If has low Ig levels or antibody production then she is Primary Immune Deficient and should receive appropriate medical therapy for that diagnosis. I believe CFIDS is a fad and a diagnosis of exclusion. That everything else has been excluded and this is a catch all. I have yet to find a criteria reference that includes one point that is objective information. The diagnosis is based on subjective findings and is at the discretion of the patient and practitioner. Please don't get caught up in the " testimonials " . Candida is a verifiable, cultured fungus that has killed many people. Candida in the blood stream can kill. Candida in large amounts in the esophagus and mouth can lead to anorexia, dysphagia and other feeding abnormalities. I've known patients to have Candida so bad that it necessitated a feeding tube. Acidophilus can help with Candida and there are many ways to get this without buying supplements. So the supplement selling theory is no good. Thrush goes along with immune deficiency or any type of immune suppression. I'm sorry if I sound alittle heated about the subject but I just feel strongly about it. Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Thanks Ursula, I guess I am just a frustrated mom looking for answers. 's doctors also don't " believe " in CFIDS either. He said she does not have an " immune system disorder' because although her numbers are low, the functionality is normal at this time. He says she is either " outgrowing a PID " or has an " immature " immune system. He said that since her functionality was good that he would not burden her with IVIG. That said, her immunologist/rheumatologist has dx'ed her with Hypermobility Syndrome as the cause of all her joint pain. is definitely double jointed. When you go to the Hypermobility Syndrome Assn. website, it talks about hypermobility as being the " real " cause of CFIDS and perhaps FMS too. If she doesn't have a PID, would hypermobility explain her gut pain, ichiness and headaches? That doesn't make sense. Would an " immature immune system " account for those symptoms??? Since her symptoms are consistent with those people who claim to have CFIDS, so I was looking to see if there were any nutritional things that " worked " for people who say they have CFIDS to see if I could extend those to . I was wondering if there were any foods that would help reduce inflammation for example. It pains me so much to see her laying on the couch grabbing at her fingers, toes and ankles and not being able to do squat to help her. Heidi At 01:50 PM 10/14/2002 -0400, you wrote: >Heidi - CFIDS is a diagnosis that I hold with about a grain of salt (this >being my personal opinion and nothing to do as >being moderator of this group). These people have fatigue that cannot be >related to any verifiable medical diagnosis or >testing and have began to believe that something in their immune system >must be at fault. Lab work that shows a true >verifiable immune dysfunction (the ID of CFIDS) is a primary immune >deficiency (PID) and fatigue is a part of having a >PID. If has low Ig levels or antibody production then she is >Primary Immune Deficient and should receive >appropriate medical therapy for that diagnosis. I believe CFIDS is a fad >and a diagnosis of exclusion. That everything >else has been excluded and this is a catch all. I have yet to find a >criteria reference that includes one point that is >objective information. The diagnosis is based on subjective findings and >is at the discretion of the patient and >practitioner. Please don't get caught up in the " testimonials " . Candida >is a verifiable, cultured fungus that has >killed many people. Candida in the blood stream can kill. Candida in >large amounts in the esophagus and mouth can lead >to anorexia, dysphagia and other feeding abnormalities. I've known >patients to have Candida so bad that it necessitated >a feeding tube. Acidophilus can help with Candida and there are many ways >to get this without buying supplements. So >the supplement selling theory is no good. Thrush goes along with immune >deficiency or any type of immune suppression. > >I'm sorry if I sound alittle heated about the subject but I just feel >strongly about it. > >Ursula Holleman >Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes >Insipidus, colonic inertia) >http://members.cox.net/maceyh > >Immune Deficiency Foundation - Peer Contact for GA >http://www.primaryimmune.org > >/ > > > >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Heidi - when Macey was about 4 she went thru a barrage of testing for juvenile arthritis. She had swollen achy joints and muscle pains. She was on Naproxen and was finding no relief. Her immunologist was also a rheumatologist and diagnosed the hypermobility. He said it would predispose her to osteoarthritis later in life and Advil and active range of motion exercises help. But they worked her up for JRA also. Achy joints are several things, from growing pains, to JRA, to even dehydration. If she's small and prone to dehydrating easily then that would account for the headaches and aches. Transient hypogammaglobulinemia of infancy sounds like what your doctor is referring to and that could take as long as 5 yrs old to grow out of. Have they run an ANA blood test to look for an autoimmune problem possibly? any thoughts that it could be JRA? Any swelling? Ursula Holleman Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes Insipidus, colonic inertia) http://members.cox.net/maceyh Immune Deficiency Foundation - Peer Contact for GA http://www.primaryimmune.org / Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Heidi, I don't know if I'm any help here or not, but someone told me that you can use oil of oregano (available in liquid pill form) to get rid of an overgrowth of yeast. Their theory was that yeast builds up throughout the body and regular treatments don't take care of all of it. Some of it still lingers throughout and causes recurrent yeast infections. At the time, I was intrigued for myself since I had a yeast infection left over since pregnancy with Duncan--more than 8 months of treatment hadn't helped. I never did try the supplement because an extra dose of diflucan " cured " it. I did some basic research on it and there seemed to be some validity to it. Unfortunately, there were an equal number of websites that also announced these types of treatments as a hoax. So. . .the short answer is, I don't know. This particular person swore by the treatment and hasn't had recurrent problems. Could just be an anecdotal story, though. Ray, mother to Tabitha (age 7), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (17 months) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 They have ruled out JRA. They also have ruled out autoimmune diseases..... Actually, I just learned (the fellow just called) that they have NOT ruled out fibromyalgia.... Heidi At 03:48 PM 10/14/2002 -0400, you wrote: >Heidi - when Macey was about 4 she went thru a barrage of testing for >juvenile arthritis. She had swollen achy joints >and muscle pains. She was on Naproxen and was finding no relief. Her >immunologist was also a rheumatologist and >diagnosed the hypermobility. He said it would predispose her to >osteoarthritis later in life and Advil and active range >of motion exercises help. But they worked her up for JRA also. Achy >joints are several things, from growing pains, to >JRA, to even dehydration. If she's small and prone to dehydrating easily >then that would account for the headaches and >aches. Transient hypogammaglobulinemia of infancy sounds like what your >doctor is referring to and that could take as >long as 5 yrs old to grow out of. Have they run an ANA blood test to look >for an autoimmune problem possibly? any >thoughts that it could be JRA? Any swelling? > >Ursula Holleman >Macey's mom (7 yr. old with CVID, asthma, sinus disease, GERD, Diabetes >Insipidus, colonic inertia) >http://members.cox.net/maceyh > >Immune Deficiency Foundation - Peer Contact for GA >http://www.primaryimmune.org > >/ > > > >This forum is open to parents and caregivers of children diagnosed with a >Primary Immune Deficiency. Opinions or medical advice stated here are the >sole responsibility of the poster and should not be taken as professional >advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Ray, How much was the person taking and for how many days? I have been researching about Candida for about a year now, as I scored extremely high on a medical checklist (that my regular physician verified was a valid questionare). Would love to be officially tested, but don't have insurance or funds to cover the testing. I have had all of the joint and muscle pain symptoms. Recently I went on a series of cleansing fasts. I did one for the kidneys and gall bladder, and then a general 10 day cleanse. I noticed that on the 5th day, everything stopped hurting. I don't know how long it has been that I haven't had aches and pains. About 1 1/2 weeks after I started eating normally, it came back. I started another cleansing fast, and on the 4th or 5th day, the pain stopped again. I don't know if I'm dealing with a food allergy or if the yeast gets starved back enough to stop hurting and then builds right back up. IF the oil of oregano is really effective, it's got to be less expensive than 3 months of diflucan, so I might be able to afford to give it a try. What I've read about oil of oregano since your first post about it has been interesting. I certainly wouldn't give it to a PID kid without doctor's approval. Some herbal remedies are contraindicated with other medications. Any info you have would be appreciated. Thanks, Wenoka At 02:58 PM 10/14/2002 -0500, you wrote: >Heidi, >I don't know if I'm any help here or not, but someone told me that you can >use oil of oregano (available in liquid pill form) to get rid of an >overgrowth of yeast. Their theory was that yeast builds up throughout the >body and regular treatments don't take care of all of it. Some of it still >lingers throughout and causes recurrent yeast infections. > >At the time, I was intrigued for myself since I had a yeast infection left >over since pregnancy with Duncan--more than 8 months of treatment hadn't >helped. I never did try the supplement because an extra dose of diflucan > " cured " it. > >I did some basic research on it and there seemed to be some validity to it. >Unfortunately, there were an equal number of websites that also announced >these types of treatments as a hoax. So. . .the short answer is, I don't >know. This particular person swore by the treatment and hasn't had >recurrent problems. Could just be an anecdotal story, though. > > Ray, mother to Tabitha (age 7), Autumn, age 4 (IgG def., asthma, >chronic sinusitis, and allergies), and Duncan (17 months) > > > >This forum is open to parents and caregivers of children diagnosed with a Primary Immune Deficiency. Opinions or medical advice stated here are the sole responsibility of the poster and should not be taken as professional advice. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 14, 2002 Report Share Posted October 14, 2002 Wenoka, She said she took it for 30 days. She even mentioned putting some of it in the wash to get the extra yeast out of clothing, bedding, and towels. I don't know if I'd go that far since vinegar will do the same thing. I use vinegar in the wash regularly anyway. I think you take one tablet 2 or 3 times daily? When I queried her about it again, she said you just use one bottle in a 30 day period, so I'm guessing it comes in a 90 ct bottle. I never went to the natural foods store to look for it. I wouldn't give it to a PID child either without the drs' approval. I might consider it for myself, but since I stopped having the infections. Ray, mother to Tabitha (age 7), Autumn, age 4 (IgG def., asthma, chronic sinusitis, and allergies), and Duncan (17 months) Quote Link to comment Share on other sites More sharing options...
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