Alternative treatments for MRSA

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lalindea

New member
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.
 
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sahein79

New member
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 sahein22@yahoo.com. Thanks!
Be well!
Samantha
 
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dramamama

New member
<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?
 
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Havoc

New member
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
 
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LouLou

New member
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?
 
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saveferris2009

New member
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!
 
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Havoc

New member
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
 
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pencf

Guest
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>
 
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LouLou

New member
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?
 
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petersymons

Guest
Hi Dramamama I would luv to hear about your experiences with Microcyn.
Regards Peter
 
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CyrilCrodius

New member
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>
 
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warriormom

New member
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
 
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warriormom

New member
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>
 
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Incomudrox

New member
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.
 
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