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LouLou
11-11-2011, 08:29 PM
I am considering trying a radical change in my life in an effort to damage my MRSA colonies and hopefully some PA colonies too!

Has anyone done anything untraditional to help battle their MRSA?

http://www.livestrong.com/article/23406-alternative-mrsa-treatment

I am becoming increasingly resistant to antibiotics. There are only two antibiotics that really are used foragressive MRSA treatment - Linezolid and Vancomycin. I may be developing a reaction to Vanco. Though I have more PA (3 versions!) I seemed to deal with PA quite well before MRSA showed up on the scene.

Anyone done anything that worked or want to try any of these methods in the link? How could they be translated to lung infections as they mostly referenceMRSAskin lesions.

JennifersHope
11-11-2011, 09:20 PM
Sorry for me Vanco actually worked better then Zyvox, though I am currently on Zyvox because apparently in addition to MAC I am now culturing MRSA again...

I am too afraid to try anything radical going off the antibiotics at this point because I was left to flounder for over a year without treatment and I got worse.

I admire you looking into other options. The only thing I have head that works is running.. Everyone I talk to that runs has been able to maintain and improve their lungs.

carmick
11-12-2011, 12:07 AM
In addition to vanco and linezolid, you can try telavancin, a new and improved version of vanco that kills bacteria in multiple ways. Therefore, it should work against MRSA if you feel that vanco isn't doing enough for you. If you react to vanco you might also react to telavancin. I pre-treat with benedryl for both so I don't get redman's syndrome.

Looking at the site you posted, I am inclined to say that tumeric doesn't work. I've been taking it for years as an anti-inflammatory/digestive aid without it killing off my MRSA. I hope we can figure out something that works, I'm running out of antibiotics, too!

Rebjane
11-12-2011, 01:12 PM
Linezolid is the drug the works best for my daughter's MRSA. We try to avoid using it, unless absolutely necessary but usually once a year, typically after the winter, she needs a 2 week course. She did have one 3 year run without needing it once which was great.

The 3 year run of not needing it coincided with her starting HTS. I love HTS, I guess it's not "alternative medicine" but the side effects are minimal so I love it! Also, Culturelle she takes everyday. Fish oil every day. Vitamin d. Next blood draw she has I want to do Magnesium levels and make sure that's ok.

Something I started recently, is sodium bicarb tablets...This is more a digestive issue but with the FDA removing Pancrecarb Which my daughter NEEDS to be on: I found that Creon plus a 1/4 tablet of sodium bicarb with every meal and large snack has done a good job of replacing the Pancrecarb. My point being the intestines are not only a diegestive organ but an immune organ. Keep the immune system as "normal" as possible to increase overall health.

The last thing we have added recently(since Sept) is soccer. Luckily my daughter loves it. The running outside is awesome. she has gotten through 3 school colds without a change in her routine. The team soccer just finished, and now she is in a "soccer clinic" which is indoors. She gets so sweaty, we just keep her hydrated and keep her running!

edan
11-12-2011, 01:46 PM
Hi Lauren. I have found this blog post super interesting. Not sure it will help you, but maybe it's worth a try? I have switched my daughter to an alkaline based diet and have stripped out most dairy and wheat to see if I can make her body less habitable for the staph she started culturing...I also now give her magnesium supplements and I believe have seen some difference in reactions I believe she has to xopanex and albuterol (perhaps a magnesium deficiency)

http://blogs.cysticfibrosis.com/blogpost.cfm?threadid=19579&catid=1962

ymikhale
11-12-2011, 02:25 PM
I am not sure tumeric works, I have been giving it to my dd for several years with no noticeable changes. I think you need to take huge amounts for it to act against inflammation, and at that level it is cancerous (according to studies).
The one thing i tried recently is garlic, i give my almost 4 y/o about 1 clove per day (in raw form). She still has staf but in lower numbers thatn before.

LouLou
11-13-2011, 12:05 AM
Thanks everyone for sharing what you are doing. Edan you must have made dramamama's ears hot (is that the saying?)

Hi Mandy, It's great to hear from you! And as always thank you for sharing your latest findings/regimen. I am always so amazed with what all you do. And the research behind it all is always so interesting and thorough. It shows just how much time you've invested in looking into all this. I read your reply but need to go through it with a fine tooth comb and ask some more questions. I'm doing some, but very little of what you suggest. I think I'm ready ...but giving up dairy and wheat. Do I have to? Do you have a food diary you could share with me? I just curious what the heck I'll eat. I eat SO MUCH dairy.

Are people inhaling the microcyn? More from me later...I need to go to bed. Again great to hear from you!

LouLou
11-13-2011, 10:24 PM
Does the colloidal silver have to be inhaled or is there another administration method? What dose do you take Incomudrox?

Incomudrox
11-13-2011, 11:57 PM
If you read the PubMed publication, it states it was taken BID.. which is orally. I take 3mL a day either BID or inhaled. I'm going to try a week straight inhaled and see if I notice a difference. I started out inhaling it but only for a few days because things got busy and I was just doing it BID. Note I am not taking any another antibiotics and haven't had any in 2 months. I'm taking advair and ventolin. No HTS and very little pulmozyme and no vest... just physical exercise. Also note my FEV1 is 29% last I knew. My last admission PFTs where in the single digits and that was 7 months ago. This is the longest streak of being out for over 3 years.

dasjsmum
11-15-2011, 04:00 AM
Lauren, how's the 770 working for you? I didnt htink you would be having these problems too much now <img src="i/expressions/face-icon-small-sad.gif" border="0">

LouLou
11-15-2011, 01:03 PM
My resistance to abx requires that when I get a lung infection I start IVs. My infection rate has decreased but not ceased. I am dealing with a lot of damage at this point. You should see my CT scan. My lung function in the mid 60s is hard earned. I can not skip any lung clearance without paying for it. Sounds like typical cf right? Needless to say, this drug alone will not be enough to end my disabled state. I attest that I still have impaired CFTR. My other mutation is DF508 so I hope to get on a drug to treat that mutation too! I should get a sweat test done or see if VX will release my sweat test numbers post drug. That said, I'm a fat cat now and have more energy.

GODBLESSMYKIDS
11-15-2011, 11:41 PM
I was so impressed with your post! My son is 18 and has had a horrible year dealing with MRSA and other bugs. In the last year he has gone from 125 lbs to113, PFT's 86 down to barely 60. He is so discouraged and this is his senior year of high school. I am desparate to find something to turn this around. He also has CFRD, and he hate the insulin shots. I copied your post to discuss with our doctor. I am willing to try whatever, but I have to get him on board. He is so tired of it all. Thanks again!!!!

dasjsmum
11-16-2011, 03:34 AM
Im sorry to hear that <img src="i/expressions/face-icon-small-sad.gif" border="0"> You had such great results in the ph2b trial...hope things turn for you <img src="i/expressions/face-icon-small-smile.gif" border="0">

ccsalema
11-16-2011, 07:27 AM
Thank you all for sharing such valuable information...inspired to figure out how to get a 12 year old boy to eat more greens!

dramamama
11-17-2011, 02:43 AM
Hi Lauren!I know..my ears were burning. I hadn't checked this forum in a long while and read your post and then read the rest of them. I didn't know until I clicked on that link that it was an old blog posting. Amazed and thankful that people still read the blogs. I wasn't good at keeping up with it...<br>I think the silver is a very safe option. I used Klearsen bc it was a trial, but I don't have a particular brand that I think is the best. I like SilverKare and have used it with great succes, but I am also impressed by what I read about Meso-silver. Silver is a wonder drug... the amazing thing about it is it kills bacteria and fungus which is SO IMPORTANT in CF. If you are too freaked to inhale it, take it orally. I just knew that for me with my abscessus and having seen what it did for my CF friend in the Netherlands, I was more than willing to inhale it. My CT Scan improved dramatically....my CF doctor sat me down and asked point blank what I was doing to see such an improvement. Again, not saying do that, just what I did.<br>One thing I read recently (which just made me sick) was that bacteria (pseudo) that was completely killed by silver could mutate and become resistant when GLUCOSE was added to the mix!!! OMGOSH!!!! What do we have to do to make CFers learn (all of us) that sugar feeds bacteria and only hurts us. Not only does sugar create inflammation, suppress immune response and WBC production, raise acidity, feed yeast, but now it helps bugs become more resistant....:-(<br>PM me if you want to know about Microcyn. I'll work on a food diary over the next few days.<br>Hi becki :-) I know what you are saying about rocking the boat. I really don't know what to tell you on that. You have allergic inflammation otherwise benadryl wouldn't help with your post nasal drip, you know? I have read that some inflammation is a good thing in cenocepacia because it keeps the bacteria from getting out of control. However, when going to a more green diet, you aren't getting rid of all immune response like you do with steroids. You are helping your body have a more healthy immune response.<br>If you have a lot of watery mucus, that is more allergic than CF. Now, many cfers have that, but it is normally do to undiagnosed allergy than it is a symptom of CF. Antibiotics cause yeast, change in bowel ecology causes allergy..... Many times, just taking allergens out of the diet will completely eliminate those kind of allergic symptoms and allergic inflammation. The crazy thing about bowel ecology is that once it is out of whack, everything you eat can have a small inflammatory response. That small inflammatory response cause yeast to grow. I think so many of us had such great success with oregano oil bc it kills bacteria and yeast.... they share biofilms and protect each other.... that is really scary.<br><br>What I can't understand though is how adding more plant based foods and less dairy will hurt you....honestly, you can keep your weight up with raw nut butters. Or, eat half of an avocado with salt and lemon pepper.... or take out veggies and hummus smothered in olive oil.Any time you want cheese, just take 2 table spoons of raw almond butter, or seasame seed butter. I'm not saying get rid of cottage cheese altogether if you can't live without it, but cut out milk, sugary yogurts and replace with plain kefir blended with frozen blueberries (or something along those lines). Replace wheat with rice for a while. If you eat the same thing every day, you have inflammation from it. Rotating your foods is the best way to keep your body from reacting to foods.<br>I'm not sure I understand about your nausea with green smoothies? I have never heard of that unless it was massive bacterial/fungal die off...which recipes did you try? I am happy to help you on that one. My guess is you were either drinking too much or you were having major die off which can happen when you change your diet to include more greens.<br>Just a little fun tid-bit. My in laws have been on a no sugar diet (anti-fungal...only veggies and lean meats) for 4 weeks bc I convinced them they needed to. My mother-in-law has to sleep with a C-Pap because her sleep apnea is so severe and has been for years. After four weeks, she has no pain in her knees and no longer needs her C-Pap bc her breathing is so much better. Now, clearly, she is not a CFer, but that is the kind of response I had on an anti-inflammatory diet which was close to the same thing.

moxie1
11-17-2011, 03:02 PM
<P>Hi Mandy,</P>
<P></P>
<P>I need to rephrase the nausea with the green smoothies. I was talking about the taste of them. They were totally disgusting to drink. Parsley was too strong for me. So was kale. Spinach and lettuce were much better, but I don't think I can rotate between two greens my whole life.</P>
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<P>I'll have to try it again. I started making just fruit smoothies and they weren't going down well either. I am realizing that I totally do not like bananas and I was using them in the green smoothies too. </P>
<P></P>
<P>Maybe a green smoothie without banana in it will be better for me.</P>
<P></P>

dramamama
11-17-2011, 06:26 PM
To Becki-Have you purchased the books, Green Smoothie Revolution and Green for Life? They have an abundance of smoothie recipes that are wonderful. Green for Life is so important too because it just has sooo much info. Also,if you have an iphone you can download the Raw Family app. for 2.00, I think. It is amazing and gives the nutritional info on each smoothie which is super helpful.... and great for shopping at the grocery :-) You might should start with a less pungent smoothie... perhaps 2 cups spinach, 1 cup frozen peaches, 7 leaves of spearmint, 1 cup water and one packet of stevia? that is yummy for a newbie!<br><br>To Havoc-Oh my. Well, I am so sorry I came off as preaching instead of teaching. That is a problem I struggle with bc I just expect that people do as much reading as I do... Sorry about that and in no way did I mean to belittle anyone or seem condescending. Thanks for callling me out on that. I will work on that. I do very little posting on here anymore bc I am more interested in the alternative way to treat illness than the ways that most people choose to follow. As you can see, I responded to the alternative treatment thread. Lauren asked what she could do to fight MRSA colonies and perhaps pseudo, and I answered her on that. You don't know me, but there was no one more devoted to a american diet than I was. I believed food could not make a difference in health. More calories equated to more health for me.... until I got sick and nothing modern western medicine offered helped in any way.<br>I am happy to go back and cite all of my sources for you on every single thing....I find that many people will learn more if they google and read for themselves. As far as hyaluronic acid is concerned, I recently brought it to the attention of a influential researcher who will be using it in her next article....<br><br>Glad you wrote about the silver havoc, because it made me go back and reread the peer-reviewed study that was published in the journal of bateriology in 1997. I read very quickly and am lucky to retain almost everything I read in a file-folder of sorts in my brain. My brother had a perfect photographic memory and mine, while not quite that good, can help me out in most instances of recall....which is one of the reasons I enjoy research so much.<br>Having said that, the bacteria was not pseudo, but E. Coli (another gram-negative)...so I stand corrected. However, there are many pseudos, cultured from silver mines, that are inherently resistant to silver which in turn makes them more more resistant to cephalasporins....something that is also echoed in this article.<br>Here is the article for you to read.http://www.ncbi.nlm.nih.gov/pmc/articles/PMC179518/pdf/1796127.pdf<br>Here is a quote from just the summary:"The addition of glucose as an energy source to a starved cell activated the efflux of Ag" (Silver).<br>And from the article, "In gram-negative bacteria, there are at least two general machanisms for effectively blocking drug acces, i.e. the outer membrane permeability and active efflux systems" which is what I was referring to in the first post.<br>With this study we see that sugar affects efflux of antibiotics. That is not why I really oppose sugar, however. The acidic nature, the fact that it feeds yeast (a terrrible problem in CF) and the fact that now so many studies are showing its correlation with degenerative diseases.... ie those who struggle with high blood sugar are twice as likely to develop dementia. It is even being suggested now that perhaps Alzheimers is the result of a protective mechansim gone astray.http://www.ncbi.nlm.nih.gov/pubmed/22047632<br>Or, that fructose is used by pancreatic cancer cells to proliferate....that is supposedly the healthy form of fruit juice.http://www.ncbi.nlm.nih.gov/pubmed/20647326<br>As far as all sugar is concerned. When I cut out all simple sugars, all wheat, all dairy except kefir (dairy is metabolized into simple sugar lactose) and most fruit (except blueberries and kiwis--which have many important polyphenols), I ate lean meats (chicken and salmon)my cultures went from:3 resistant pan mucoid strains to all pan-sensitive 2 mucoid and 1 regular pa in a time period of 4 weeks. <br>Not only that, but now almost 7 years later all of my pseudo are non-mucoid. This is unheard of in the CF community with regular CF diet, and especially for a older cystic like myself (38). Also, something I didn't mention. I used to have aqua-genic wrinkling of the hands...some studies show that 80% of Cfers have this. I no longer am affected by this at all. I am in contact with a dermatology researcher who will begin a study on the effect green smoothies have on aqua-genic wrinkling and gene expression... Adding to that, my skin is not as salty as it used to be...very excited to pay for another sweat test to see if the numbrs are less than when I was diagnosed.<br>Also, I don't need to take steroids now. All I do is tweak my diet and I have reduced inflammation. I choose that for myself because it is a healthier option. And, I can stay on an anti-inflammatory diet for as long as I like. Whereas someone who takes steroids for anti-inflammatory effect, has to deal with horrible side effects of steroids. Cfrs are encouraged to take zithromax as an anti-inflammatory and yet just this year there is evidence to prove that zithromax predisposes cfers to acquiring mycobaterial disease (specifically abscessus)....because it prevents WBCs from autophagy and lysis. That is a hugh problem bc WBCs in Cf already can't fight bacteria...1/3 as effective in a chloride defficient environment. http://www.jleukbio.org/content/83/6/1345.full.pdf<br>http://www.ncbi.nlm.nih.gov/pubmed/21804191 I am one who developed m. abscessus after long zithromax therapy (and steroids).High does ibuprofen does the same thing...keeps wbcs from making hypochlorous acid.<br>Again, do what you will with the info. I suggest googling and reading...<br>I also almost went into kidney failure from treatment for abscessus and have several friends who have gone deaf from it. And, yet, I still cultured the bug in smears and cultures. It wasn't until silver that I no longer cultured abscessus.<br>If you want to continue consuming large amounts of soda, more power to you. Adding phosporous to your body increases minerals known to exist in a highly acidic body (phosporous and copper). Several studies have shown that children and adult Cfers have over-abundance of copper in their blood...that homeostasis is off.http://www.ncbi.nlm.nih.gov/pubmed/10613413I'm not saying you are going to have high blood sugar. I'm saying your body will become more acidic...which is the problem. High acid=inflammation=disease.<br>Also, you missed the point on plants. Yes, they do contain sugars, but they also contain polyphenols and antioxidants which fight everything from free radical damage to bacteria and yeast. I'm advocating low sugar plants (green leafy variety) as opposed to just squash, for instance. I also had one of the top docs in the CF Foundation tell my hubby something interesting: Start eating more broccoli sprouts. My husband only said that I was interested in how food affects CFTR expression and one of the top docs said eat more broccoli sprouts? I haven't seen a study on that, so why does he think it is important?<br>As far as cholesterol, you know that your body makes cholesterol to protect the organs from the acidic nature of the blood, right? It is a protective mechanism your body uses to build up calcium/plaque in arteries so that the acid doesn't eat away at the arteries. Reminds me of what bacteria do to protect themselves in the harsh environment in the CF lung.... The body does what it knows to do to survive when presented with certain data....you brought up homeostasis. That is the definition of homeostasis. Acidic blood, make more cholesterol. Try to maintain pH by stealing calcium, magnesium from bones and creating more cholesterol in the liver to protect vital organs. What organs are involved depends on your genetic make-up and gene expression due to diet.<br>Read up on Dean Ornish who is an expert on the field of coronary heart disease. he is well known for his vegan diet (with some lean meats) that completely reverses heart disease defined by plaque in the arteries... Bill Clinton follows his diet. Steve Jobs was one of his best friends. he did a study I believe in 1990 or 1991 that lasted one year. Those who ate the vegan diet saw a decrease and reversal of narrowing of the arteries while those in the control group on regular heart disease treatment all faired worse and had worsening narrowing of the arteries. He also has done amazing studies on gene expression and diet....which is what I am talking about in CFTR. He is peer-reviewed and published many times over. I think instead of posting here you might consider googling him, pub-meding him, and buying one of his many books.<br>Lastly, i have no reason for posting this last article for anything other than it interests me. Children who do not have CF can have CF positive sweat tests when exposed to a drug that is an anti-convulsant. I think it is so intertesting that a drug can cause a positive sweat test. Wouldn't it be amazing if diet could cause a negative sweat test... jury is out on that one.http://www.ncbi.nlm.nih.gov/pubmed/22081517

Havoc
11-17-2011, 09:07 PM
Thank you for your response and for citing some articles for myself and others to read.
<br>
<br>Please don't get me wrong, I don't consume much soda, I was simply using that as an example at how fast simple carbohydrates are metabolized, which is why I questioned the sugar and silver theory. Sure the dormant, nutrient starved cells woke up and started mutating when exposed to glucose in vivo, but as the aminoglycoside study illustrates, simple sugars like glucose are not ideal for waking up dormant bacteria in vitro, because they are metabolized before they can do the job. Complex carbohydrates, might get you there, though (it doesn't take a high concentration of sugar to wake these dormant cells up). I need to read up on pH and bacterial proliferation. Given that the pH range in humans is so narrow (7.35-7.45), I will be interested to find how fluctuations within that range translate into large physiologic effects. Especially in the absence of sustained acidosis secondary to uncontrolled hyperglycemia and bacteria's ability to adapt to very extreme environments.
<br>
<br>Also, my reference to cholesterol was a throwback to the day when there was that "no cholesterol" craze. Scientists said 'hyperlidemia causes arterial stenosis," so every company started touting no cholesterol or low cholesterol on their products. The same thing happened with vitamin C and cold duration and, more recently, curcumin. I wonder how much of the green, vegan, glycemic index, or paleo diets are some science infused with a whole lot of marketing. Which then triggered my reference to the knee-jerk reaction of avoiding pools because of bacteria, when your shower or mobile phone provides plenty of it. Put it together and you get "scientists have discovered X, and we have a buttload of product X to sell to you." with *results not typical in extremely small print. Yet, people run en masse to the store to get the latest fad.
<br>
<br>I also agree with most of your stance on nutrition. At one time I was like you, eating as much calories as I pleased and not caring from whence they came. CF clinics are starting to educate patients on the importance of healthy balanced diets, while maintaining BMI.
<br>
<br>I do wish there were more studies on alternative treatments, as I think there is some benefit. However, big pharma won't fund something they can't patent. I personally don't down every pill I can get my hands on. I keep my treatments to an absolute minimum and it seems to have served me well. I don't do prophylactic antibiotics, pulmozyme, HTS, albuterol nebs etc. I only take pancreatic enzymes, (the dose of which dropped by 2/3 after I changed my diet) Protonix and Flonase. My point is that perhaps one needs to modify their diet, but not as much as you have. Yup, we know diets high in cholesterol and carbohydrates are bad for you, especially with the right combination of genetics. But do we all need to radically change our diets, or just moderate them?
<br>
<br>So, as I mentioned before, I don't necessarily disagree with everything you say, even though I do question some of it. I do appreciate you taking the time to respond and give citations.<br><br>I should add, if the aminoglycoside study is correct, wouldn't it be a bit ironic in light of your stance on sugar, if a sugar combined with the antibiotics was the answer to her persistent staph?<br>

dream2live
11-17-2011, 11:10 PM
<P><STRONG>I am willing to try anything to rid myself of MRSA, plus my multiresistant pseudomonas strains. My last hospital visit, I was told there was nothing left antibiotic wise. They referred me to pallative care, etc., but i refuse to give up (Im 43 years old).On top of this, I now get C. diff. I just dont understand these small town doctors. If u are going to overload a patient with antibiotics, the next obligation would be to put the patient on a hidh dose of pro-biotics, etc.</STRONG></P>
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<P>I have decided to go to UAB since it is a teaching hospital and see if there is anything else they test for and see what options they may be able to offer. </P>
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<P>IN THE MEAN TIME, I WELCOME ALL TO CORRESPOND WITH ME AND HELP.</P>
<P></P>
<P>Rhonda/43/Delta F508</P>

TreasureGoddess
11-17-2011, 11:50 PM
My son's had good response to inhaled gentamycin. It's an older antibiotic, but REALLY helps his symptoms when the mrsa flares up. Ask your CF dr about it!! We've done the linezolid and vancomycin (iV in hospital) when needed, but since starting the gent almost 1.5 yrs ago we've had NO (knock on wood) flareups or extra coughs due to mrsa. Before that it was a constant battle.<br><br>Good luck!<br>Christine<br>

imported_lalindea
11-18-2011, 12:26 PM
Hi!First Thank you for all the info. you posted you have no idea how much that means to me!!! Is my first time here I'm a mother of 3, Niko 17yrs. CF F508/W1282x, Melanie 14yrs. carrier W1282x and Ethan 11yrs, CF F508/W1282x.
We are so worried because Ethan is not doing well at all!!! he has been in and out the hospital for the last 2 years, the most he was out of the hosp. was this summer for 3 months but he was with oral antibiotics. One week ago we came out after been in for 17 days (he was coughing blood) and 3 weeks before that both of them were admitted for 14 days. Our problem is that Ethan is resistant to almost EVERY antibiotic, we have to use 3 different antibiotic combined to see some results, we even are giving him a antibiotic that is not approved here yet call Fucidine 250 ( Fusidic Acid) we got it from Spain because he is resistant to even Zyvox, the only sensitives are Synercid, Sulfa and Vanco (we have to give benadryl before the dose). He has a VERY resistant MRSA and Aspergillus and Stenotrophomonas maltophilia. He has a suppurative broncoxtasias in his uper right lung and they are thinking in removing that area.
After reading all your posts i'm thinking WHAT are they doing with my son!!!! Why they don't say this things, why they don't educate us why they don't say anything regarding the diet!! just eat a lot, salty and calories!! were am I? are all centers equal? this is my 3rd. (Miami Childrens, Joe Di Maggio both in South Florida and even in Barcelona Spain!!!) the only thing they told me was the Turmeric. And know that I read what dramamama post MAKES SENSE to me. The sugar part OMG!!! my older son is much healthier but he NEVER eats sweets, no even fruits, he eats veggies, no cookies, no juice, no candy, no cake, no syrup, the only sweet is honey once in a wile with waffles, in the other hand is Ethan who loves candy, fruits, cereals. Milk we don't drink a lot dairy we don't consume a lot, but we need more GREENS!!! and eliminate the wheat!!
Magnesium, they never check, Ethan was low in vitamin D! waw!! I definitely have to review my kids treatments because what we are doing is not enough and I think we were all this time with so many antibiotics that his body is so intoxicated and so confuse as I'm. Kills me to know that still a lot to do and they are telling me that are not more options.
Thanks to all of you for all the info. today I learn a lot!!!! from it. Is not late yet to start the change.

sahein79
11-18-2011, 02:54 PM
Hello Dramamama,
We have so much in common. I would love to speak with you or email with you. You can find me on FB at Samantha Hein, or email at [email protected] Thanks!
Be well!
Samantha

dramamama
11-18-2011, 03:46 PM
<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>Havoc</b></i> My point is that perhaps one needs to modify their diet, but not as much as you have. Yup, we know diets high in cholesterol and carbohydrates are bad for you, especially with the right combination of genetics. But do we all need to radically change our diets, or just moderate them? </end quote>

<br>Seeing as most of us here have been diagnosed with one of the most common fatal, genetic illnesses, I can't understand how a radical change in diet can be frowned upon.... I am trying to understand, and thought about it so much last night and this morning, why your post upset me so much. And, I have come to to the realization, you just haven't been desperate yet. Possibly you haven't been told you only have maybe a year to live or that there is nothing more the doctors can do to fight your specific bugs without killing you. Perhaps you haven't had 7 sinus surgeries and one frontal sinus obliteration where they peel your face off. Perhaps you haven't had hemoptysis everyday for months on end. Perhaps you haven't struggled with chronic pain for 4 years straight. Perhaps you haven't had to be on ivs continuously for months. Perhaps you haven't had fevers everyday for close to a year. Perhaps you have never had constipation from drugs... Perhaps you haven't needed some sort of pain reliever daily for 13 years. Horrible, horrible heartburn was a constant in my life. Perhaps living in the hopsital hasn't been the norm for you?<br>I don't know your story and you most certainly don't know mine. My life changed and the course of my disease changed when I started an anti-inflammatory diet...that was almost 8 years ago. Every single thing I mentioned above is what I struggled with before I "radically" changed my diet. I went from being on antibiotics everyday to not needing any (including ivs) for more than a year. I took pain medicine for a port placement for one day... Other than that, I don't even need ibuprofen ever. Well, the occasionally menstrual cramp, but that is it.<br>I don't need protonix or anything like that anymore bc all symptoms of acid reflux have gone away comletely. Same for my hubby who used to take meds for severe acid reflux. In my experience, acid reflux happens due to too much acid being present at the wrong time. Food allergies can cause acid reflux. The more acidic your body is, the less acid your stomach produces which causes GERD.... It is paradoxical, but it is in fact, correct. This also creates big problems with yeast bc food enters your small intestine without being digested in the stomach... This allows for crazy amounts of undigested food to serve as food for yeast and other bacteria to grow in the gut.<br>To your point, I don't take any CF drugs exept enzymes and hypertonic. i don't need a nasal steroid bc my sinuses are better than a non-cfer accoring to my ENT. I just went to my sinus surgeon two weeks ago and he said he had never seen anything like it: complete reversal of CF sinus disease without drugs.... I haven't had to take an antibiotic and or steroids for my sinuses in 7 years. My polyps went away from diet.<br>Some people are desperate because they have reached their end. Some people are desperate bc they see loved ones suffering. Some people are desperate bc nothing else is working. Desperation causes people to search every where for an alternate way of existing. Sometimes that is bad, but sometimes it is exactly what needs to happen. If my experiences can help one person, I'm glad that the Lord allowed me to have my struggles. <br>Havoc, you seem like a very intelligent person who is well read. Unless you have tried this way, I would discourage you from making comments about it. I'm not jumping up and down telling people to buy greens because they are a fad. I'm doing it because it saved my life. I counsel people everywhere about diet and have witnessed the miraculous transformations in health of others. People who know my hubby (but not me because I am a hermit) find him and tell him how cutting out sugar has saved the life of their cystic spouse or child: How they went from high 30's fev1 to 50% and running on a treadmill. <br>Am I radical? Absolutely. When it comes to diet, I fully accept my radical nature. I guess my question is, when did we get so screwed up that staying on antibiotics for years at a time is normal and cutting out sugar and wheat and adding in a diet heavy on greens is radical?

moxie1
11-18-2011, 05:34 PM
Dramamama, I sent you a pm.

Havoc
11-18-2011, 06:35 PM
You're quite right, I don't have a hard time of it with my CF. My worst complaint has been my sinuses and that's only been in the last 2 years, strangely after I made (positive) changes to my diet. Nor do I doubt that desperation drives you to try just about anything. It's the mirage in the desert, maybe it's real.

I am and always will be a skeptic, of everything. Many many times I have seen people, news sources, apparent authorities, get things wrong. If you aren't an expert in that particular field you might not notice a glaring error. For example, almost a year ago the Huffington Post ran a story that said that Betelgeuse, one of the closer stars to Earth, will go supernova, perhaps within a year. During this time, it would be visible during the day, although the Huffington Post reported that it would be like a second sun and that there would no night in some parts of the world.

The truth is, that Betelgeuse is losing mass and will go supernova at some point, could be tomorrow could be in a million years, we don't know. It will be visible during the day, but more like the moon is sometimes visible during the day, not a second sun in the sky. It seems that some news sources heard a tidbit of science and really ran with it. I wanted to know more about the event and the science behind how they knew the star was losing mass, so I started reading and to my surprise, I realized that the story was total bunk. This is one of the latest in a long series of events where I heard something and it either was wrong completely or greatly exaggerated.

I think anyone who knows me and my posts will tell you that I often play devil's advocate on posts where there isn't a concrete set of answers or empirical data. The reason isn't to upset anyone or hijack the thread, but rather, I want people to read for themselves and come to their own conclusions, even on topics with which I mostly agree. As I mention in another thread I started, I think it's an extremely dangerous position to place yourself, taking someone's word for something without question. I encourage everyone to be skeptical and ask questions, however the reality is that most people will hear something and run with it, just like the Huffington Post did. We are a world of sheep, blindly following a few leaders.

I hope your post has encouraged people to do some research and reach conclusions. If anyone does decide to try changing their diets, I hope you will report to us any changes. If I remember from one of your former posts, you saw results in a matter of months, so this should be an easily tested theory.

Best regards,

Jonathan

LouLou
11-19-2011, 12:26 PM
I just want to reiterate how thankful I am that Mandy has shared her experience and regimen (based on extensive research) with us. She doesn't give herself credit for the level of research she has done and the impact she has had on the medical world (in this post). When something doesn't make sense to her or she has questions she contacts the leader in the field and talks with them. Name one other person on this site that is that involved with research? I can only think of a handful.

I am honored to have her here sharing what she does. That is all she is doing is sharing what she has done that has worked for her. It takes extreme discipline that I'm sure the majority of us wish we could make ourselves do. Despirate times call for despirate measures they say. I am ready to sacrafice my gummy bears and maybe my boat loads of milk for a healthier diet. What would be easier for me as refined flour is not one of my vices.

And that is the reason we don't hear our doctors telling us this stuff. They know a lot of it but heck have difficulty getting us to adhere to even basic cf regimens. This lifestyle makes doing our nebs, vest, etc. a piece of cake. Doctors get that.

Regarding Jonathans devils advocate approach. Perhaps next time you or someone wanting to take this approach could take more of a scholarly approach. Flatter and thank then briefly ask your questions in a way that don't necessarily say you are expecting answers or judging. The long paragraphs with not much meat aren't that helpful and can come off as judgemental.

Specifically about your sugar question. I think it's a well known fact that sugar feeds bacteria & yeast. Aside from that with our likihood to develop CFRD many doctors and scholars still believe that there may be a link to developing it based on consumption even though I am well aware that there is no hard evidence. The finding about the sugar helping the abx work isn't strange to me. It's teasing the bacteria out and then strategically killing it. Feeding the gut sugar is completely different than putting a sugar isolete in a drug strategically into the lungs. I will say though I did think on more than one occasion if having sugar during an infusion might be the best time of day to have it...excuses, excuses :-)

...but then again I'm not a sheep, I'm a leader :-) I'd never take something from this site and start that I hadn't researched. I wonder how many people would. Every single post Mandy has posted on this site provides value. IMHO we need to highly encourage people like her to contribute.

Now, other people out there...those of you PM'ing with Mandy. Please share here so that we can learn from each other. It's always good to hear Mandy's regimen, especially as it evolves over time but I want to hear from others. Maybe you lurkers out there. What are you doing?

saveferris2009
11-19-2011, 06:57 PM
Love ya, Mandy. You have helped my health in so many ways.... first one being increasing my PA sensitivities to more class of abx.

I know we see eye to eye about NAC, a drug that I know has helped prevent permanent lung damage.

Thus far, your research has been spot on for me. I just wish I had enough time and brain power to digest all of your research - you are a true light of hope and new perspective in the CF Community. I thank God for you!

Havoc
11-19-2011, 11:32 PM
I appreciate your feedback. Normally, I would post more substance in my post to counter a particular viewpoint that I was trying to challenge, but in this case it just doesn't exist or it's contradictory.

I know a few of us on this site are a fan of TED Talks. I watched a few today and I ran onto one that brought this thread to mind. Here is the link if you care to watch. Also, TED is a treasure trove of great information on all kinds of subjects. I hope you enjoy it as much as I have.

http://www.ted.com/talks/lang/en/ben_goldacre_battling_bad_science.html

pencf
11-21-2011, 10:45 AM
We used and now are going to start back up again Homeopathy to combat our bug we dislike the most, B. Cepacia. My daughter, now 16, first showed the bug at age 4, we started homeopathy treatment at age 5, and we had no hospitalizations until age 10. I got lazy with using the prescribed homeopathy medications, but just called today to get them again and start up! WE are having similar issues with antibiotics to treat, and I have to give credit where credit is due, and I am 100% sure that using homeopathy remedies in conjunction with traditional medicine, is the Number 1 Reason we enjoy a long stint of wellness with B. Cepacia and PA.<br>My only recommendation is, Find a homeopathic physician that is both Western Doctor who advocates for homeopathy. I was not going to give up on Western Medicine completely, and person who is both and MD and a Homeopath was the right choice. <br>Good Luck!<br>

LouLou
12-06-2011, 04:27 PM
Those of you who were in the Klearsen Colloidal Silver study. Did you ever hear about the results? I'm curious what the dose was and what the results were? lizlas, dramamama? others?

petersymons
02-05-2012, 09:49 AM
Hi Dramamama I would luv to hear about your experiences with Microcyn.
Regards Peter

CyrilCrodius
05-08-2012, 08:48 AM
I posted this in another thread but I think I should post it here too. I have inhaled Advanced Colloidal Silver from Utopia Silver twice. The first time was 2 years ago. The second time was a month ago. I had ordered 2 bottles and I opened a new one to use it in inhalation last month to be on the safe side. It didn't go well. My lungs reacted to it and became inflamed. A day later I had the biggest episode of hemoptysis since my embolization. I then remembered that it was the reason why I had discontinued it in the first place, because it causes me inflammation. I personally have concerns about the possibility of catching new bacterias from inhaling this. I highly doubt that these products meet the requirements to be considered as sterile so there are good reasons to be concerned about contamination. It's even worse considering that most CS products are sold in 200mL bottles or more. We all know that more than single use containers are more than very prone to contamination. This case reports the kid taking it orally though. That is probably still worth a try. (I have yet to try it, I never think of taking it.) <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2443992/">http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2443992/</a>

warriormom
05-28-2012, 05:51 AM
Hello Dramamama,

I sooo relate to your post and need your insight and would love to talk to you!! I have a 16 year old son with severe CF. He has been resistantto theantibiotics and desperately looking for other answers. Pllease call <strong><em>**Removed by Administrator - Please refreighn from posting phone numbers on the open internet for your own saftey.**</em></strong>I work nights so usually after 5pm is best.

Thank you,

Warriormom

warriormom
05-28-2012, 06:15 AM
I am like you in need of alterative therapies antibiotics are no longer working. please call me<strong><em>**Removed by Administrator - Please refrain from posting phone numbers on the open internet for your own saftey.**</em></strong>

Incomudrox
06-15-2012, 09:59 AM
Please do not post your phone number on the boards. I will Send Dramamama your number.

-Forum Administrator.

Incomudrox
06-15-2012, 10:03 AM
I sent Dramamama your phone number. If she calls you that is upto her. Please do not post your number on the open internet.

- Forum Administrator.

epicurus
09-23-2012, 10:14 PM
Apparently vitamin B3 in high doses can help the body fight off MRSA. Read the full article here http://www.cfandhealthy.blogspot.com.au/