Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 ken: there is an herb called lomatium that works better than anything i've ever tried on external skin fungul problems. try the liquid tincture and apply it topically. i once used it on athletes foot and it completely cured the infection overnight Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 I'VE HAD ATHLETES FOOT FOR A FEW MONTHS NOW. WHERE DO I GET LOMATIUM OIL AT? THANKS. ----- Original Message ----- From: " aluckower " <aluckower@...> > ken: > > there is an herb called lomatium that works better than anything i've ever > tried on external skin fungul problems. try the liquid tincture and apply > it > topically. > > i once used it on athletes foot and it completely cured the infection > overnight Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 Health food store? Jay Ice wrote: > > I'VE HAD ATHLETES FOOT FOR A FEW MONTHS NOW. WHERE DO I GET LOMATRIUM OIL AT? > THANKS. > > ----- Original Message ----- > From: " aluckower " <aluckower@...> > > > ken: > > > > there is an herb called lomatium that works better than anything i've ever > > tried on external skin fungul problems. try the liquid tincture and apply > > it > > topically. > > > > i once used it on athletes foot and it completely cured the infection > > overnight > > > OxyPLUS is an unmoderated e-ring dealing with oxidative therapies, and other alternative self-help subjects. > > THERE IS NO MEDICAL ADVICE HERE! > > This list is the 1st Amendment in action. The things you will find here are for information and research purposes only. We are people sharing information we believe in. If you act on ideas found here, you do so at your own risk. Self-help requires intelligence, common sense, and the ability to take responsibility for your own actions. By joining the list you agree to hold yourself FULLY responsible FOR yourself. Do not use any ideas found here without consulting a medical professional, unless you are a researcher or health care provider. > > You can unsubscribe via e-mail by sending A NEW e-mail to the following address - NOT TO THE OXYPLUS LIST! - > DO NOT USE REPLY BUTTON & DO NOT PUT THIS IN THE SUBJECT LINE or BODY of the message! : > > oxyplus-unsubscribeegroups > > oxyplus-normalonelist - switch your subscription to normal mode. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 10, 2003 Report Share Posted September 10, 2003 you can get lomatium tincture at a good health food store with a selection of herbs Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Hi Trudy Really good probiotics, there seem to be a few that stand out like three lac and primal defense. I used to be Rx amphotericin b but the last time I used it it did not work so well and although it is not supposed to be absorbed from the gut it made me tender around the liver area after a while, did not feel so good either. After that I went for a protocol that would treat more than just canida since the whole of my GI tract, gall bladder and liver seemed to be in a mess. This time I wanted to be sure the candida did not come back and to treat any yeast/fungal infections as well. I opted for garlic first, then berberine complex gradually building up to the max dose of 2 caps tid, then wild oregano oil and finally grapefruit seed extract. This was during the time everyone was raving about olive leaf extract but it did not do much for me at all, I just keep some around for when a virus strikes now. There are many options for treating candida without antifungal meds, so I am sure you will get lots of other suggestions. Cheers, Tansy > Hi everyone, > > I would like to know what people are doing alternatively to treat fungal > infections (i.e. candida, yeast, etc.)? What products are you using? > > Thanks! > > Kind regards, > Trudy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Hi Tansy, You are so full of good information. Thanks for sharing it so generously! Okay, this new ND that I am seeing has me on a program for yeast; however, I don't think it is aggressive enough. My new motto is: " Take no prisoners! " ;-) LOL With my ND's program I think that I have the probiotics covered. He also has me taking oregano, bentonite and Herbal Bulk (Genestra). I don't know what berberine is, so I'll have to research that one. I know about garlic for yeast. What kind of garlic did you take? Did you take the powdered capsules? I've got some Allimax here that I picked up off the bargain table. Do you think that might work? Not long ago I purchased some grapefruit seed extract. How did you take it? I found the taste difficult and was wondering if I could just put it in gelatin caps. What do you think about that? Thanks for your help, Tansy! Kind regards, Trudy Message: 18 Date: Tue, 26 Apr 2005 22:26:57 -0000 From: " tansyap " <tansyap@...> Subject: Re: Fungal Infections Hi Trudy Really good probiotics, there seem to be a few that stand out like three lac and primal defense. I used to be Rx amphotericin b but the last time I used it it did not work so well and although it is not supposed to be absorbed from the gut it made me tender around the liver area after a while, did not feel so good either. After that I went for a protocol that would treat more than just canida since the whole of my GI tract, gall bladder and liver seemed to be in a mess. This time I wanted to be sure the candida did not come back and to treat any yeast/fungal infections as well. I opted for garlic first, then berberine complex gradually building up to the max dose of 2 caps tid, then wild oregano oil and finally grapefruit seed extract. This was during the time everyone was raving about olive leaf extract but it did not do much for me at all, I just keep some around for when a virus strikes now. There are many options for treating candida without antifungal meds, so I am sure you will get lots of other suggestions. Cheers, Tansy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 Hi Trudy I used garlic caps with a high allicin content, I also ate raw garlic and crushed fresh garlic onto hot food just before eating to avoid destroying the allicin. The Berberine complex I used is sold under the PhytoPharmica label and consists of extracts of barberry, Oregon grape, and goldenseal. The blurb on it says it – " Exhibits broad antibacterial, antifungal, & antiprotozoal effects Excellent for use with " travelers diarrhea " or acute diarrhea. Has shown effectiveness with diarrhea secondary to cholera, giardiasis, & non-specific gastroenteritis. Inhibits the growth of candida & other fungi without killing acidophilus, bifidus, & other beneficial gastrointestinal organisms. Is helpful with infection of the mucous membranes i.e. mouth, throat, sinuses, bronchi, urinary & gastrointestinal tissue. Has immune modulatory as well as its antibiotic, anti-infective effects. Has anti-convulsant and sedative effects. May be beneficial with cirrhosis. Has blood pressure lowering effects. May help with those ventricular heart irregularities caused by decreased blood supply to the heart. Is used in China to treat white blood cell depression caused by chemotherapy/radiation treatments. " Seemed like a good choice for me, especially since I knew I was dealing with more than yeast in my GI tract and others had found it worked for systemic yeast and fungal infections. I hope the oregano your ND has recommended is wild oregano oil, it's much more effective. After using WOO I said goodbye to my almost constant chronic sinusitis, just get the odd flare up now and then which soon goes. My stomach does not tolerate grapefruit juice and objected almost as much to the grapefruit seed extract in liquid form, so I just used some tabs I found, seemed to work. One probiotic which helped with oral candida and my gastritis especially was the powdered form of flora balance, a soil based organism. Cheers, Tansy > Hi Tansy, > > You are so full of good information. Thanks for sharing it so generously! > > Okay, this new ND that I am seeing has me on a program for yeast; > however, I don't think it is aggressive enough. My new motto is: " Take > no prisoners! " ;-) LOL > > With my ND's program I think that I have the probiotics covered. He > also has me taking oregano, bentonite and Herbal Bulk (Genestra). > > I don't know what berberine is, so I'll have to research that one. > > I know about garlic for yeast. What kind of garlic did you take? Did > you take the powdered capsules? I've got some Allimax here that I > picked up off the bargain table. Do you think that might work? > > Not long ago I purchased some grapefruit seed extract. How did you take > it? I found the taste difficult and was wondering if I could just put > it in gelatin caps. What do you think about that? > > Thanks for your help, Tansy! > > Kind regards, > Trudy > > Message: 18 > Date: Tue, 26 Apr 2005 22:26:57 -0000 > From: " tansyap " <tansyap@y...> > Subject: Re: Fungal Infections > > > Hi Trudy > > Really good probiotics, there seem to be a few that stand out like > three lac and primal defense. > > I used to be Rx amphotericin b but the last time I used it it did not > work so well and although it is not supposed to be absorbed from the > gut it made me tender around the liver area after a while, did not feel > so good either. > > After that I went for a protocol that would treat more than just canida > since the whole of my GI tract, gall bladder and liver seemed to be in > a mess. This time I wanted to be sure the candida did not come back and > to treat any yeast/fungal infections as well. > > I opted for garlic first, then berberine complex gradually building up > to the max dose of 2 caps tid, then wild oregano oil and finally > grapefruit seed extract. This was during the time everyone was raving > about olive leaf extract but it did not do much for me at all, I just > keep some around for when a virus strikes now. > > There are many options for treating candida without antifungal meds, so > I am sure you will get lots of other suggestions. > > Cheers, Tansy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2005 Report Share Posted April 26, 2005 hi u can buy grapeseed extract in capsules.. i think the liquid might eat thru any capsule u put it into..i was on it for short term to clean out the junk in my stomach and found it hard to tolearte ...good luck tealk ps now i use it to keep my water from growing anythinmg > [Original Message] > From: Trudy Newman <tnew@...> > < > > Date: 4/26/2005 8:09:28 PM > Subject: Re: Fungal Infections > > > Hi Tansy, > > You are so full of good information. Thanks for sharing it so generously! > > Okay, this new ND that I am seeing has me on a program for yeast; > however, I don't think it is aggressive enough. My new motto is: " Take > no prisoners! " ;-) LOL > > With my ND's program I think that I have the probiotics covered. He > also has me taking oregano, bentonite and Herbal Bulk (Genestra). > > I don't know what berberine is, so I'll have to research that one. > > I know about garlic for yeast. What kind of garlic did you take? Did > you take the powdered capsules? I've got some Allimax here that I > picked up off the bargain table. Do you think that might work? > > Not long ago I purchased some grapefruit seed extract. How did you take > it? I found the taste difficult and was wondering if I could just put > it in gelatin caps. What do you think about that? > > Thanks for your help, Tansy! > > Kind regards, > Trudy > > Message: 18 > Date: Tue, 26 Apr 2005 22:26:57 -0000 > From: " tansyap " <tansyap@...> > Subject: Re: Fungal Infections > > > Hi Trudy > > Really good probiotics, there seem to be a few that stand out like > three lac and primal defense. > > I used to be Rx amphotericin b but the last time I used it it did not > work so well and although it is not supposed to be absorbed from the > gut it made me tender around the liver area after a while, did not feel > so good either. > > After that I went for a protocol that would treat more than just canida > since the whole of my GI tract, gall bladder and liver seemed to be in > a mess. This time I wanted to be sure the candida did not come back and > to treat any yeast/fungal infections as well. > > I opted for garlic first, then berberine complex gradually building up > to the max dose of 2 caps tid, then wild oregano oil and finally > grapefruit seed extract. This was during the time everyone was raving > about olive leaf extract but it did not do much for me at all, I just > keep some around for when a virus strikes now. > > There are many options for treating candida without antifungal meds, so > I am sure you will get lots of other suggestions. > > Cheers, Tansy > > > > > > > > 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 April 27, 2005 Report Share Posted April 27, 2005 Hi Tansy, Okay, in the past I used to eat a lot of raw garlic. It seemed, however, that I was the only one who appreciated it! ;-) LOL My sister gently told me that the smell was going through my skin. I better stick with the pills. I will look into Berberine. I'm busted flat right now and will have to wait until next month. From my studies I see that it is also helpful for parasites. It seems that garlic, grapefruit seed extract and oregano are also helpful. I'm also planning on doing a parasite cleanse during all of this. Okay, I looked on the bottle of Oregano that my ND put me on. It doesn't say " wild. " It just says " standardized extract from leaves. " I'll look and see if they have a " wild " version the next time I'm at my health food store. (I've also added Garden of Life's Fungal Defense to his pills. Basically, I'm just using it up before the expiry date. I think that Garden of Life is a pretty good product--expensive anyway! ;-) I had some Grapefruit Seed Extract pills on hand, but they must have been 10 years old. I was uncomfortable using them, so I will have to get some new ones when I get some money. I'll also check and see if they have Flora Balance. Sometimes it is really hard to get these products here in Canada. Other times I'm amazed that our local stores carry them. Thanks for all the info. Kind regards, Trudy Message: 3 Date: Wed, 27 Apr 2005 00:48:30 -0000 From: " tansyap " <tansyap@...> Subject: Re: Fungal Infections Hi Trudy I used garlic caps with a high allicin content, I also ate raw garlic and crushed fresh garlic onto hot food just before eating to avoid destroying the allicin. The Berberine complex I used is sold under the PhytoPharmica label and consists of extracts of barberry, Oregon grape, and goldenseal. The blurb on it says it " Exhibits broad antibacterial, antifungal, & antiprotozoal effects Excellent for use with " travelers diarrhea " or acute diarrhea. Has shown effectiveness with diarrhea secondary to cholera, giardiasis, & non-specific gastroenteritis. Inhibits the growth of candida & other fungi without killing acidophilus, bifidus, & other beneficial gastrointestinal organisms. Is helpful with infection of the mucous membranes i.e. mouth, throat, sinuses, bronchi, urinary & gastrointestinal tissue. Has immune modulatory as well as its antibiotic, anti-infective effects. Has anti-convulsant and sedative effects. May be beneficial with cirrhosis. Has blood pressure lowering effects. May help with those ventricular heart irregularities caused by decreased blood supply to the heart. Is used in China to treat white blood cell depression caused by chemotherapy/radiation treatments. " Seemed like a good choice for me, especially since I knew I was dealing with more than yeast in my GI tract and others had found it worked for systemic yeast and fungal infections. I hope the oregano your ND has recommended is wild oregano oil, it's much more effective. After using WOO I said goodbye to my almost constant chronic sinusitis, just get the odd flare up now and then which soon goes. My stomach does not tolerate grapefruit juice and objected almost as much to the grapefruit seed extract in liquid form, so I just used some tabs I found, seemed to work. One probiotic which helped with oral candida and my gastritis especially was the powdered form of flora balance, a soil based organism. Cheers, Tansy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 27, 2005 Report Share Posted April 27, 2005 Hi tea lk, That is a great idea to add grapeseed extract to water. I was recently thinking it might be a good idea to add a few drops of colloidal silver to tap water. Once I get rid of all these parasites, I don't want to see them again! ;-) Kind regards, Trudy Message: 11 Date: Tue, 26 Apr 2005 23:06:01 -0400 From: " tea lk " <48tealk17@...> Subject: RE: Re: Fungal Infections hi u can buy grapeseed extract in capsules.. i think the liquid might eat thru any capsule u put it into..i was on it for short term to clean out the junk in my stomach and found it hard to tolearte ...good luck tealk ps now i use it to keep my water from growing anythinmg Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 In a message dated 5/4/2005 7:44:07 A.M. Eastern Daylight Time, tripletsand1@... writes: I was wondering if anyone here has a PID child who has problems fighting fungal infections? Conner has a small (size of a quarter) lesion on his arm that his ped and pulmonologist believe is fungal, we've been treating it with topical creams for a few weeks now and it just doesn't seem to be getting much better. Is this ringworm? Is it growing? Or is it staying the same? Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 , I wouldn't mess around with Drs. who are guessing...Call the immunologist, explain what is happening and how far away you are. At least he/she will be able to indicate if you should be more aggressive and point your Dr. in the right direction. My Dr. always said one of the risks with skin issues in the chance of flesh eating disease. Not trying to scare you, just what they said to me. Good luck. Kim, Mom to 8 - CVID Fungal Infections > I was wondering if anyone here has a PID child who has problems > fighting > fungal infections? Conner has a small (size of a quarter) lesion > on his arm > that his ped and pulmonologist believe is fungal, we've been > treating it > with topical creams for a few weeks now and it just doesn't seem > to be > getting much better. I've been trying to get him into our > infectious > disease doc but haven't had any luck. I'm trying to figure out > how serious > something like this is for him and how pushy I need to get with > the docs to > get it taken more seriously. From what I understand, fungal > infections can > sometimes indicate a problem with T-cell function, but it could > have also > been caused by the steroids that caused his adrenal problem. His > pulmonogist thought that maybe someone should put him on an oral > anti-fungal, but he didn't want to do it himself. His > immunologist is 7 > hours away. Any advice? > > > > > Mom to Conner (10, Asperger's, partial seizures, asthma, GERD, > immunodeficiency-SCIG, and now adrenal insufficiency), > Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), > Evan (10, asthma and mild hearing loss/unaided), > and Kelsey - surviving triplet (9 going on 19!) > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 , Just to clarify, I am not suggesting that he has flesh eating...just that a skin lesion can be an entry for it. Kim Fungal Infections > > > I was wondering if anyone here has a PID child who has problems > > fighting > > fungal infections? Conner has a small (size of a quarter) > lesion > > on his arm > > that his ped and pulmonologist believe is fungal, we've been > > treating it > > with topical creams for a few weeks now and it just doesn't seem > > to be > > getting much better. I've been trying to get him into our > > infectious > > disease doc but haven't had any luck. I'm trying to figure out > > how serious > > something like this is for him and how pushy I need to get with > > the docs to > > get it taken more seriously. From what I understand, fungal > > infections can > > sometimes indicate a problem with T-cell function, but it could > > have also > > been caused by the steroids that caused his adrenal problem. > His > > pulmonogist thought that maybe someone should put him on an oral > > anti-fungal, but he didn't want to do it himself. His > > immunologist is 7 > > hours away. Any advice? > > > > > > > > > > Mom to Conner (10, Asperger's, partial seizures, asthma, GERD, > > immunodeficiency-SCIG, and now adrenal insufficiency), > > Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), > > Evan (10, asthma and mild hearing loss/unaided), > > and Kelsey - surviving triplet (9 going on 19!) > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 4, 2005 Report Share Posted May 4, 2005 When was littler he did and they put him on oral diflucan and it cleared it up when the creams didn't help. Amy Re: Fungal Infections > >In a message dated 5/4/2005 7:44:07 A.M. Eastern Daylight Time, >tripletsand1@... writes: > >I was wondering if anyone here has a PID child who has problems fighting >fungal infections? Conner has a small (size of a quarter) lesion on his arm > >that his ped and pulmonologist believe is fungal, we've been treating it >with topical creams for a few weeks now and it just doesn't seem to be >getting much better. > > >Is this ringworm? Is it growing? Or is it staying the same? > >Janet, Mom to Brittany, CVID, age 14 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 In a message dated 5/4/2005 4:43:52 AM Pacific Standard Time, tripletsand1@... writes: His pulmonogist thought that maybe someone should put him on an oral anti-fungal, but he didn't want to do it himself. His immunologist is 7 hours away. Any advice? , My son has had yeast in his ear canals just from showering. I still have to keep wax earplugs in his ears to limit water exposure. When his Ped gave Diflucan for this, it was given for seven days. It can be hard on the liver if used incorrectly or too often. It was very effective. Sandi, Mom to , age 12. CVID, Tetrology of Fallot, Pulmonary valve transplant (2003), asthma, Carnitine deficiency, GERD Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 5, 2005 Report Share Posted May 5, 2005 In a message dated 5/5/2005 8:08:29 P.M. Eastern Daylight Time, sassykay59@... writes: It can be hard on the liver if used incorrectly or too often. It was very effective. Britt has been on Diflucan for a year now. They did blood work to check her liver and it was fine. I was worried about it also. But she has to have it for Chronic Candidia. Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 In a message dated 5/6/2005 1:10:30 P.M. Eastern Daylight Time, tripletsand1@... writes: I thought I had remembered reading that PID kids often have trouble with yeast/fungal infections. I thought it was usually a problem with t-cells that caused this (but I could be way off base). We still don't really know how much t-cell function Conner has, although his actual t-cell numbers are normal. It is common with PID kids. Britt's T cells are fine. When they get these funguses they are hard to get rid of. Anyone have problems with their kids toenails with fungus? Britt has that also. It didn't respond to lamisil treatment. Janet, Mom to Brittany, CVID, age 14 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 6, 2005 Report Share Posted May 6, 2005 Thanks for the responses, I pushed the issue and was able to get a dermatologist to see Conner yesterday. He agrees that it is likely fungal and put him on some stronger topical meds, but if it doesn't respond quickly then he will probably go on an oral anti-fungal. He also did a scraping but said it will take at least 2 weeks to see if anything grows. I thought I had remembered reading that PID kids often have trouble with yeast/fungal infections. I thought it was usually a problem with t-cells that caused this (but I could be way off base). We still don't really know how much t-cell function Conner has, although his actual t-cell numbers are normal. Anyway, I just never seem to know what will pop up next with this kid! He hasn't had a very healthy spring (a case of bronchitis and two sinus infections) and is supposed to stop SCIG at the end of the month so we can check levels this summer, I sure hope he does okay! Mom to Conner (10, Asperger's, partial seizures, asthma, GERD, immunodeficiency-SCIG, and now adrenal insufficiency), Hayden (10, PDD-NOS, IBS and moderate hearing loss/aided), Evan (10, asthma and mild hearing loss/unaided), and Kelsey - surviving triplet (9 going on 19!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Conner fought a fungal infection on his arm for a few months last Spring. Our docs believed it was from our pets (cat/dog), even though they were indoor pets. We finally found new homes for them. Conner's T-cell function is questionable, we will be doing bacteriophage testing this summer to try to pinpoint his disorder. Mom to Conner (11, Asperger's, mild CP, partial seizures, asthma, GERD, Hashimoto's disease, hypogammaglobulinemia, complement deficiency, antibody deficiency, NK cell defect, and resolved adrenal insufficiency), Hayden (11, PDD-NOS, IBS and moderate hearing loss/aided), Evan (11, asthma and mild hearing loss/unaided), and Kelsey - (10) Please visit us at www.caringbridge.org/in/connersmith Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2009 Report Share Posted September 5, 2009 I must be the exception to the comment by Dr. Furman about fungal infections being unusual with CLL patients. I have had more life-threatening infections than I count - four this year (one currently in my lungs), not counting less severe fungal infections of the skin, etc. I also have had a systemic fungal infection a couple of years ago. And the amazing part of this tale - I have been on full dose Posaconazole since March and have developed these four fungal infections of 2009. Prior to 2009, I was taking Diflucan prophylactically and Itraconazole sprinkled in with IV Caspofungin and IV Micafungin. What would predispose me to this rate of fungal infections, Dr. Furman? I am very immune compromised after 13+ years with CLL, so I am assuming this to be the cause. Are there other contributing factors that come to your mind? Also, Pat had posted a question for me because I am very ill right now with a fungal infection in my lungs regarding the rapidity with which this recent fungal culture grew out (less than a week) versus all of the others taking 3-4 weeks. Can you direct me (and the group) to a resource that lists fungi and their time to growth on culture? I know it will be another 2-3 weeks before I have the fungi ID'd and sensitivities that will confirm whether or not the IV Micafungin has the lowest MIC. I appreciate your generous gift of time and knowledge that you share with this CLL Community. Stacie In His grip, Stacie Current Age 45; CLL diagnosed at age 33 in 1997 after abnormal CLL in 1996 at age 32 DISEASE HISTORY: 2007 Monthly IVIG begins due to being severely immunocompromised (Low neutrophils, Low IgG, IgA, and IgM as well as depleted T-Cells that never recovered after Fludarabine) Multiple Anaphylactic Drug Reactions-Desensitization now required for all drugs (Believed to be CLL mediated) Leukapheresis 1999-2001 to lower WBC levels of over 300,000 RBC transfusions - Multiple Extensive use of Neupogen 98% marrow involvement since 1999 CONVENTIONAL TREATMENTS: Fludarabine + Rituxan (5 days + 1 day) May 2002; Fludarabine (3 days) Sept. 2003; Fludarabine + Rituxan (4 days + 1 day) April 2004; Rituxan-4 Weekly Infusions - October 1- October 23, 2004; Half Dose Rituxan + Neupogen and Multiple Other " Alternative Additions " (8 weeks)- June - August 2009 ALTERNATIVE TREATMENTS: Acupuncture and Chinese Massage 2008 Used Artemisinin and Butyrate which lowered WBC 1998 - IV Hydrogen Peroxide and IV High Dose Vitamin C 1999 - 714 X injections 2000 - Laetrile 2009- Currently taking with Half-Dose Rituxan: Singulair, Neupogen, Green Tea Extract, Curcumin, Beta Glucans, Probiotics, Barley Grass and Kelp, Vitamin D3, Alpha Lipoic Acid, Cranberry Extract, Fish Oil, Juicing, Anti-Cancer Diet " For by Me your days will be multiplied and years added unto your life. " - Proverbs 9:11 My faith and love of God: My source of hope, life, and healing. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 If it is a place to paint it Genetian Violet works GREAT but it turns everything purple. Diet is another issue with it being REALLY important to cut down yeast and sugar foods. Also may want to eat good quality yogurt to try to change the flora. BARBIE ________________________________ From: kristinz4 <kristin-smith@...> Sent: Fri, April 22, 2011 6:26:15 AM Subject: Fungal Infections Does anyone deal with difficult to treat fungal skin infections? All of my kids have had issues with fungal infections, but we seem to be having a particularly tough time at the moment. We have two kids on long-term oral antifungals because they just don't seem to respond to topical treatments. I'm also finding between our immunologist and infectious disease doc, that there really aren't many options for treating. There seem to be only a handful of drugs and all have the potential for serious side effects. Conner's liver numbers are still slightly elevated due to the powerful antifungals used during transplant. Anyway, I'm trying to find some resources for good information on the drugs and maybe some good ways to prevent infections. I'm concerned that if they are prone to these skin infections that it wouldn't be too difficult for some of these infections to become systemic, which really worries me. Our docs have Conner using Nizoral shampoo on his body a couple of times a week, but I'm starting to think that might have made some of this stuff resistant. All four of our kids have a severe MBL (mannose binding lectin) deficiency and we think this is what's causing the problem. Conner's BMT didn't cure this part of the immune system, he would have needed a new liver for that (and we aren't going there!). Thanks in advance for any advice or commiserating :-) (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (15-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Hi All ~ My one son goes in spurts with yougart. Would a yougart smoothe work the same way? Just thought I would mention and ask. Take care, Terri 3 sons, , (Brutons), From: kristin-smith@... Date: Fri, 22 Apr 2011 16:23:06 +0000 Subject: Re: Fungal Infections Barbie, I agree, gentian violet is the best, especially for thrush (it cures stuff that Nystatin can't touch). I actually turned the transplant team onto it when I started using it for Conner's thrush. I've never thought about using it on the skin though. Right now we are dealing with a full body fungal rash, can you imagine if we used that? LOL! I think I really need to research the diet stuff, I haven't looked at that much. My kids aren't big yogurt eaters, but someone just told me about Kefir, I'm going to get some of that to see if they like it. Thanks for the push to look into this a bit more. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Sometimes they like the Greek yogurts better with fresh fruit and nuts or honey. They are actually better for you anyway since they have more protein. the best ones are like Trader Joes, 's etc not Yoplait since it is SOOO full of additives. 'sBARBIE ________________________________ From: kristinz4 <kristin-smith@...> Sent: Fri, April 22, 2011 9:23:06 AM Subject: Re: Fungal Infections Barbie, I agree, gentian violet is the best, especially for thrush (it cures stuff that Nystatin can't touch). I actually turned the transplant team onto it when I started using it for Conner's thrush. I've never thought about using it on the skin though. Right now we are dealing with a full body fungal rash, can you imagine if we used that? LOL! I think I really need to research the diet stuff, I haven't looked at that much. My kids aren't big yogurt eaters, but someone just told me about Kefir, I'm going to get some of that to see if they like it. Thanks for the push to look into this a bit more. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 Yogurt in any form is fine. I use it instead of sour cream to make Ranch dressing and many other foods I add it instead of the milk. It works great and gives you the benefits. I freeze fruit and then throw it in with yogurt for Smoothies then no ice is needed. BARBIE ________________________________ From: Terri Cahill <terric2000@...> Sent: Fri, April 22, 2011 9:51:11 AM Subject: RE: Re: Fungal Infections Hi All ~ My one son goes in spurts with yougart. Would a yougart smoothe work the same way? Just thought I would mention and ask. Take care, Terri 3 sons, , (Brutons), From: kristin-smith@... Date: Fri, 22 Apr 2011 16:23:06 +0000 Subject: Re: Fungal Infections Barbie, I agree, gentian violet is the best, especially for thrush (it cures stuff that Nystatin can't touch). I actually turned the transplant team onto it when I started using it for Conner's thrush. I've never thought about using it on the skin though. Right now we are dealing with a full body fungal rash, can you imagine if we used that? LOL! I think I really need to research the diet stuff, I haven't looked at that much. My kids aren't big yogurt eaters, but someone just told me about Kefir, I'm going to get some of that to see if they like it. Thanks for the push to look into this a bit more. Take care, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 22, 2011 Report Share Posted April 22, 2011 , e gets a lot of fungal infections too....besides the Nizoral shampoo, we sometimes use Betadine to " paint " the affected area....this can help......also, this seems rough but I've been assured by the dermatologist that it is not......soak in bathtub full of warm water with one cup of Clorox bleach mixed in there....not much different than chlorine in a swimming pool actually.....this is good. She also has him do one bath soak a week with a cup of rock salt mixed in the water...she said this helps the overall health of the skin and makes it less of a host for fungi.....it's also a very soothing mineral bath. I am very fearful of systemic antifungals unless absolutely necessary.....as you have expressed......they are so hard on the liver...............hugs sue From: kristinz4 <kristin-smith@...> Subject: Fungal Infections Date: Friday, April 22, 2011, 1:26 PM  Does anyone deal with difficult to treat fungal skin infections? All of my kids have had issues with fungal infections, but we seem to be having a particularly tough time at the moment. We have two kids on long-term oral antifungals because they just don't seem to respond to topical treatments. I'm also finding between our immunologist and infectious disease doc, that there really aren't many options for treating. There seem to be only a handful of drugs and all have the potential for serious side effects. Conner's liver numbers are still slightly elevated due to the powerful antifungals used during transplant. Anyway, I'm trying to find some resources for good information on the drugs and maybe some good ways to prevent infections. I'm concerned that if they are prone to these skin infections that it wouldn't be too difficult for some of these infections to become systemic, which really worries me. Our docs have Conner using Nizoral shampoo on his body a couple of times a week, but I'm starting to think that might have made some of this stuff resistant. All four of our kids have a severe MBL (mannose binding lectin) deficiency and we think this is what's causing the problem. Conner's BMT didn't cure this part of the immune system, he would have needed a new liver for that (and we aren't going there!). Thanks in advance for any advice or commiserating :-) (NEMO carrier) Mom to Hayden (16-unknown PID) Evan (16-unknown PID) Conner (16-NEMO; bone marrow transplant 8/17/07) Kelsey (15-unknown PID and NEMO carrier) Wife to (unknown PID) www.caringbridge.org/visit/smithkids Quote Link to comment Share on other sites More sharing options...
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