So given my PFT's the doctor obviously wanted to know what I had been doing. The conversation went something like this. I started out with an 'ok I will tell you and I realize this is fringe and not at all main stream CF but.....recap of ca visit....recap of FNP visit and her thoughts on candida....recap on all test outcomes....recap on what measures I had taken and how I now felt.
He asked some questions. He was very interested in DramaMama's (Mandy's) insulin experience so I am going to get some follow up info on that. He said we only have just scratched the surface of knowing about the body etc etc he's glad to see me feeling so much better, yada yada, he's glad they didnt miss anything as far as what Dr. Moss checked (my dr is Stanford alum and knew Dr. Moss).
I told him that I realized this was not main stream and right now its an isolated finding and could be coincidental (from how I feel internally I can tell its not but I"m talking scientifically) or it could be from my one month of colistin but that I hoped two years from now to be sitting there still doing just as well and perhaps by then someone will have done some more lookign into it or it will get some additional interest from them based on my 'experiment'. He was overall very pleasant, very pleased, interested, wanted a bit of information additionally, but skeptical---of course. He said he liked to listen and was very interested and impressed.
Friday, April 23, 2010
Candida Treatment & Clinical Outcomes
This is what I have done to treat candida. In addition I have added in trying to take some measures to alter the acidity of my body. In addition to the items listed below I have been drinking green smoothies every day and drinking water with lemon juice, braggs whole apple cider vinegar, or grape fruit seed extract in it.
The convoluted treatment schedule I followed (PS I would do this all different now):
diflucan started ~March 6th
started taking caprylic acid & garlic ~ March 12th
dabbling in reducing sugar in diet ~ March 15th
added in oregano oil and pau'd'arco tea ~ March 19th
truly started sticking to a MEVY diet~March 29th
fell off the wagon a bit with sugar splurge April 13-16th
rededicated to MEVY for two more weeks April 17th
NOte: Diflucan was 150mg every day from March 6th through April 21st (6.5weeks) then I am finishing up with every other day until 5May (Note: it was supposed to be 200mg but I already had the 150's and it RX as 4 weeks then 2 of every other day. I kept fubbing my dietary attempts and wanted the diflucan to coincide so I extended it though until I wrote this I didnt realize by how much, oops)
So its worth noting that I have talked about my previous die off reactions in other posts. I was extremely affected by both it being a bad time of year for me (March) and the die off reaction. I was having hemoptysis off and on for 3 days around april 9-11th. Afterward I got very productive and short of breath, if I hadnt been in the middle of my 'experiment' and felt like that normally I would have tossed in the towel and headed off to see the doctor. BOY am I glad I waited it out. It is also worth noting that I did not feel well at all until last week about April 16th and that is why I decided to rededicate very stringently for two weeks because I realized despite adding back in some sugar whcih made me sleepy I was feeling better overall than I had in a long time. Before that I had one sort of die off reaction after another or I was just fatigued in general.
Numbers speak louder than words:
FEV1 114% which is 14% up from 2 months ago and the ONLY thing different is the candida treatment, I even stopped taking NAC so I could not confound the results with a double variable.
FEV25-75 102% which is up 12% from 2 months ago.
Disclaimer: I actually did take colistin for the first time in March, I did not notice a huge difference when I was on it but I also had a hideous cold, bad time of year, hemoptysis, die off reactions etc. My being SOB and productive extended well beyond when I was done with that as did my pain and pleurisy so I do not believe colistin has anything to do with the results. Additionally I was showing no signs of infection when I started it which was shortly after IV's with zosyn and the doctor confirming after that my lungs sounded completely clear and I was not getting any 'goo' up at all.
Additionally, my chronic pain in my left side is gone, pleural pain gone, hemoptysis gone, mucous production greatly reduced, my tongue is pinker than I ever remember and the 'sores' on the side where it started looking crazy after this treatment was begun are GONE, and I have more energy than I remember having in a long, long, long time.....like years.
The convoluted treatment schedule I followed (PS I would do this all different now):
diflucan started ~March 6th
started taking caprylic acid & garlic ~ March 12th
dabbling in reducing sugar in diet ~ March 15th
added in oregano oil and pau'd'arco tea ~ March 19th
truly started sticking to a MEVY diet~March 29th
fell off the wagon a bit with sugar splurge April 13-16th
rededicated to MEVY for two more weeks April 17th
NOte: Diflucan was 150mg every day from March 6th through April 21st (6.5weeks) then I am finishing up with every other day until 5May (Note: it was supposed to be 200mg but I already had the 150's and it RX as 4 weeks then 2 of every other day. I kept fubbing my dietary attempts and wanted the diflucan to coincide so I extended it though until I wrote this I didnt realize by how much, oops)
So its worth noting that I have talked about my previous die off reactions in other posts. I was extremely affected by both it being a bad time of year for me (March) and the die off reaction. I was having hemoptysis off and on for 3 days around april 9-11th. Afterward I got very productive and short of breath, if I hadnt been in the middle of my 'experiment' and felt like that normally I would have tossed in the towel and headed off to see the doctor. BOY am I glad I waited it out. It is also worth noting that I did not feel well at all until last week about April 16th and that is why I decided to rededicate very stringently for two weeks because I realized despite adding back in some sugar whcih made me sleepy I was feeling better overall than I had in a long time. Before that I had one sort of die off reaction after another or I was just fatigued in general.
Numbers speak louder than words:
FEV1 114% which is 14% up from 2 months ago and the ONLY thing different is the candida treatment, I even stopped taking NAC so I could not confound the results with a double variable.
FEV25-75 102% which is up 12% from 2 months ago.
Disclaimer: I actually did take colistin for the first time in March, I did not notice a huge difference when I was on it but I also had a hideous cold, bad time of year, hemoptysis, die off reactions etc. My being SOB and productive extended well beyond when I was done with that as did my pain and pleurisy so I do not believe colistin has anything to do with the results. Additionally I was showing no signs of infection when I started it which was shortly after IV's with zosyn and the doctor confirming after that my lungs sounded completely clear and I was not getting any 'goo' up at all.
Additionally, my chronic pain in my left side is gone, pleural pain gone, hemoptysis gone, mucous production greatly reduced, my tongue is pinker than I ever remember and the 'sores' on the side where it started looking crazy after this treatment was begun are GONE, and I have more energy than I remember having in a long, long, long time.....like years.
Thursday, April 22, 2010
Compliance Comparison
I'd like to point out that every year since Jan 2007 I have had plans on how I would further improve my compliance and do more to get healthier and while I realize alot of people can work their @sses off just to hold ground or loose more slowly I think what I have accomplished says alot about compliance for those who may still think, as I once did that they are 'compliant-ish' and thats enough.
Numbers speak louder than words so here is my comparison:
4Dec2007: FVC 99 FEV1 91 FEV25-75 77
23Apr2010 FVC 127 FEV1 114 Fev25-75 102
Summary up28% up 23% up 25%
Numbers speak louder than words so here is my comparison:
4Dec2007: FVC 99 FEV1 91 FEV25-75 77
23Apr2010 FVC 127 FEV1 114 Fev25-75 102
Summary up28% up 23% up 25%
Clinic History
23Apr2010 FVC 127 FEV1 114 (up 14% WOW) FEV25-75 102 (up 12% WOW)
Notes: this is especially fantastic given my allergies are running wild and I have seen a drop in my peak flow the past few days from it. I normally write down my PEF (peak flow) but he pointed out that mine was off the chart this time, my Peak flow was 11.82 which equates to 150 L/min higher than two months ago i.e. the little plastic things we use measures in L/min.
Clinic Notes: Discussed recent treatment for candida. Fatigue, chronic pain, pleural pain, all gone. Lung functions are the best on record and it is after no drugs or steroids where as the 108% last year was after serious steroids. Please see here for all details:
18Feb2010 FVC 110 FEV1 100 (down 4% more-total8%) FEV25-75 90 (up 2%)
Clinic Notes: This was post IV's (stopped Christmas Eve) and 2 rounds prednisone totaling 5 weeks (1st round stopped New Years day and 2nd round was 3 weeks in January). Infection is gone but still having chronic pain on left side when breathing, especially deep breathing, still intermitten pleurisy, still fatigued and not feeling right, feel like I do right before I get a bleed. Discussed potentially entering chronic pain phase of CF (I do not accept this). Also started drinking mucomyst N-acetylcysteine since last visit so reported good results in gastro area from this, no large effect noted on the lungs. Discussed going to CA to consult with Dr.Moss on inflammation and also discussed pursuing testing for candida with family doctor.
**oops missed a couple, need to dig around and find those**
3May2009 FVC 118 FEV1 104 (down 4%) FEV25-75% 88 (up 1%)
Clinic Notes: re-check post steroids and pre-pregnancy (attempt). Everything looks great, feeling good, allergies are problematic and doc did say that my theory on my allergic reactions having residual inflammatory effect on my lungs (which I did another week steroids for) was very possible. His pregnancy recommendations are to be vigilent with physiotherapy especially hit it hard in 2nd tri' to get ready for 3rd when lungs are most compromised and there is the biggest risk.
March2009: FVC FEV1 108 FEV25-75% 87
Clinic Notes: Recheck after end of steroids, feeling good. Best FEV1 ever!
29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.
15Dec2008 FEV1 103 FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)
21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt152
Clinic Notes: was getting huge variability and felt something 'stuck'
25Jun2007: FVC 105 FEV1 97 FEV25-75% 82
4Dec2007: FVC 99 FEV1 91 FEV25-75% 77
Notes: this is especially fantastic given my allergies are running wild and I have seen a drop in my peak flow the past few days from it. I normally write down my PEF (peak flow) but he pointed out that mine was off the chart this time, my Peak flow was 11.82 which equates to 150 L/min higher than two months ago i.e. the little plastic things we use measures in L/min.
Clinic Notes: Discussed recent treatment for candida. Fatigue, chronic pain, pleural pain, all gone. Lung functions are the best on record and it is after no drugs or steroids where as the 108% last year was after serious steroids. Please see here for all details:
18Feb2010 FVC 110 FEV1 100 (down 4% more-total8%) FEV25-75 90 (up 2%)
Clinic Notes: This was post IV's (stopped Christmas Eve) and 2 rounds prednisone totaling 5 weeks (1st round stopped New Years day and 2nd round was 3 weeks in January). Infection is gone but still having chronic pain on left side when breathing, especially deep breathing, still intermitten pleurisy, still fatigued and not feeling right, feel like I do right before I get a bleed. Discussed potentially entering chronic pain phase of CF (I do not accept this). Also started drinking mucomyst N-acetylcysteine since last visit so reported good results in gastro area from this, no large effect noted on the lungs. Discussed going to CA to consult with Dr.Moss on inflammation and also discussed pursuing testing for candida with family doctor.
**oops missed a couple, need to dig around and find those**
3May2009 FVC 118 FEV1 104 (down 4%) FEV25-75% 88 (up 1%)
Clinic Notes: re-check post steroids and pre-pregnancy (attempt). Everything looks great, feeling good, allergies are problematic and doc did say that my theory on my allergic reactions having residual inflammatory effect on my lungs (which I did another week steroids for) was very possible. His pregnancy recommendations are to be vigilent with physiotherapy especially hit it hard in 2nd tri' to get ready for 3rd when lungs are most compromised and there is the biggest risk.
March2009: FVC FEV1 108 FEV25-75% 87
Clinic Notes: Recheck after end of steroids, feeling good. Best FEV1 ever!
29Feb2009 FVC 111 FEV1 100 (down 3%) FEV25-75% 88 (down 14%)
Clinic Notes: feel inflammatory in nature start 2 weeks steroids 40mg taper. Still got streaking in day 2 steroids.
15Dec2008 FEV1 103 FEV25-75 102%
Clinic Notes: summer steroids early winter cold w 3 weeks cipro)
21Feb2008: FVC 105.3 FEV1 99.3 FEV25-75% 89.1 BP 114/68 HR 59 Wt152
Clinic Notes: was getting huge variability and felt something 'stuck'
25Jun2007: FVC 105 FEV1 97 FEV25-75% 82
4Dec2007: FVC 99 FEV1 91 FEV25-75% 77
Saturday, April 3, 2010
Candida Cleansing Symptoms? (TMI WARNING)
So some strange things I have noticed since starting this. I am not joking way way way TMI so you have been warned.
Ok on my tongue, I mentioned before there are spots on the side that are perfectly pink like a kids tongue and they are surrounded by a thicker white ring. These spots still remain and are not sore. Though the spots, interestingly, do change in size and shape over time. I have never seen anything like this before. I read of one lady doing detox and she said she got sores and stuff all over the insider her mouth and I wonder if this is like that? The only time I have ever had anything like this is when I had a bad flu and I got sores on the inside of my mouth and the doctor at the time said it was viral and they would clear up with the flu and they did. I have been drinking a TON of green smoothies with various greens that are supposed to be excellent for binding to toxins that normally lay in our body a long time or forever such as heavy metals along others. I wonder if the cilantro and dandelion greens have anything to do with this in a cleansing way. Anyway, if nothing else it is interesting and worth noting incase someone else tries this.
Ok now for the really gross stuff! #2 discussed in detail!
The first thing I noticed that was really strange in my poop was that there was small white particulate matter floating in the toilet all over. It is there frequently, especially with larger BM's. I havent been able to think of how to describe this and finally I settled on dandruff it looks like really bad dandruff in the toilet and you can see some of it floating up out of the 'movement'. Then, yesterday, when showing my friend the spit test I previously posted on it 'clicked' and I realized the white stuff looked ALOT like the stuff that was floating in my glass after the spit test. I wonder if the dandruff is candida that is being removed from my system?
The next weird #2 thing is what I believe to be mucous related. I have NEVER been able to see mucous in my stool like they say many cf'ers have, ever. Part of that may be because I spit out most of my mucous. Lately however I have had what looks like mucous sheaths in my stool, it will be bound around a larger BM and look like the BM has wings almost as it floats all around. With smaller BM's they will actually all be tied together by this long string of stuff. Yesterday, for the first time I had a movement in which just a huge piece of that stuff came out.
Now I can assure you, since I dont swallow my mucous, that this is not swallowed mucous. It looks like really thin translucent chicken skin, it is white but its translucent and moves around in the water so you can see it is thin. The only thing I can think of is I did dry skin brushing a few times which says it will move mucous from your sytem but I am hesitant to believe. More later
Ok on my tongue, I mentioned before there are spots on the side that are perfectly pink like a kids tongue and they are surrounded by a thicker white ring. These spots still remain and are not sore. Though the spots, interestingly, do change in size and shape over time. I have never seen anything like this before. I read of one lady doing detox and she said she got sores and stuff all over the insider her mouth and I wonder if this is like that? The only time I have ever had anything like this is when I had a bad flu and I got sores on the inside of my mouth and the doctor at the time said it was viral and they would clear up with the flu and they did. I have been drinking a TON of green smoothies with various greens that are supposed to be excellent for binding to toxins that normally lay in our body a long time or forever such as heavy metals along others. I wonder if the cilantro and dandelion greens have anything to do with this in a cleansing way. Anyway, if nothing else it is interesting and worth noting incase someone else tries this.
Ok now for the really gross stuff! #2 discussed in detail!
The first thing I noticed that was really strange in my poop was that there was small white particulate matter floating in the toilet all over. It is there frequently, especially with larger BM's. I havent been able to think of how to describe this and finally I settled on dandruff it looks like really bad dandruff in the toilet and you can see some of it floating up out of the 'movement'. Then, yesterday, when showing my friend the spit test I previously posted on it 'clicked' and I realized the white stuff looked ALOT like the stuff that was floating in my glass after the spit test. I wonder if the dandruff is candida that is being removed from my system?
The next weird #2 thing is what I believe to be mucous related. I have NEVER been able to see mucous in my stool like they say many cf'ers have, ever. Part of that may be because I spit out most of my mucous. Lately however I have had what looks like mucous sheaths in my stool, it will be bound around a larger BM and look like the BM has wings almost as it floats all around. With smaller BM's they will actually all be tied together by this long string of stuff. Yesterday, for the first time I had a movement in which just a huge piece of that stuff came out.
Now I can assure you, since I dont swallow my mucous, that this is not swallowed mucous. It looks like really thin translucent chicken skin, it is white but its translucent and moves around in the water so you can see it is thin. The only thing I can think of is I did dry skin brushing a few times which says it will move mucous from your sytem but I am hesitant to believe. More later
Candida Die Off - Take Three!
So my first die-off reaction was when I first started taking diflucan, I didnt reckognize it at the time but I was on perhaps day 3 of my diflucan and was traveling to San Francisco and I hurt so much, every joint, I was warm but I dont think feverish, I was so tired, and I had bouts of heaving and nauseau in addition to being VERY SOB and some hemoptysis.
Then after getting home I was very tired, and very very productive, I couldnt keep my eyes open it seemed my body was forcing me to rest. I was again very short of breath and it felt like stuff just kept coming. I basically felt like I had a cold but worse and again my joints hurt. Its not like a cold where its continually increasing then continually decreasing it is more intermittent.
My third bout is right now and it started on the 6th day of the MEVY diet with absolutely no cheating. MEVY is meat, eggs, veggies, and yogurt (plain unsweetened). I have a headache, my joints hurt for the evening last night but not horrible like before and it wasnt all of them. Mostly I feel week and woozey and then when I exert myself I get sweat/clamy like with a low blood sugar but my blood sugar, surprisingly given what I am eating, is not low. I am pretty sure this is a combination of another small round of die-off but also alot ot do with my body getting used to making energy differently since I am not giving it anything quick i.e. carbs to feed off of.
Then after getting home I was very tired, and very very productive, I couldnt keep my eyes open it seemed my body was forcing me to rest. I was again very short of breath and it felt like stuff just kept coming. I basically felt like I had a cold but worse and again my joints hurt. Its not like a cold where its continually increasing then continually decreasing it is more intermittent.
My third bout is right now and it started on the 6th day of the MEVY diet with absolutely no cheating. MEVY is meat, eggs, veggies, and yogurt (plain unsweetened). I have a headache, my joints hurt for the evening last night but not horrible like before and it wasnt all of them. Mostly I feel week and woozey and then when I exert myself I get sweat/clamy like with a low blood sugar but my blood sugar, surprisingly given what I am eating, is not low. I am pretty sure this is a combination of another small round of die-off but also alot ot do with my body getting used to making energy differently since I am not giving it anything quick i.e. carbs to feed off of.
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