Thursday, 25 April 2013

My First Post-Kalydeco Scan


A couple of months ago I had a CT scan done to check on how my lungs are going. I was curious to find out how they looked after being on Kalydeco for almost a year. I was expecting not so great reports as I've plateaued  in the last few months in terms of lung function (which I will explain latter. So anyway I was VERY pleasantly surprised by what was explained and showed to me....

First Post-Kaydeco CT Scan

1. The before & after Kalydeco xray images are remarkable! The pre-kalydeco xray has white, grey all over both lungs indicating, mucus, infection & damage (bronchiectasis). Post Kalydeco xray was black except for a small portion in my upper left lobe. WOW!!! What a difference. Black is good, that's normal lung.

2. The CT part of the scan (the detailed inside look) revealed that my lungs are in much better shape than expected. The upper left lobe sustains the most (extensive) of bronchiectasis & a less on the right upper lobe, but I mostly amazed that it is no present in lower half of my lobes. In the picture below if you drew a line above the words "upper lobe" that's where the bronchiectasis remains. The AMAZING thing is all the xrays before Kalydeco indicated I had bronchiectasis & crepitations (crackles) came from my lower left & right lobe too (lesser than the upper, but still there). 



Post Kalydeco scan: neither are present in the lower half of my lungs!!!!



So back to my FEV: aka 'Lung Function'. Recently I have been looking at what happened around the time I plateaued from 65% - 55% (on K) several factors were clear, a cold in the house, weather/season changed (winter), asthma flared up, hormones/PMS was increasing inflammation in my lungs... blah blah .... anyway after a long 'THINK THINK THINK'! I remembered that at the same time (for the first time since starting Kalydeco) I ran out (stopped taking) of Chlorella. Up to that point I was taking 45 tablets a day + the chlorella extract (30-60ml). When I started taking Chlorella (before K) it made me feel much stronger within days, once on K, my improvement was rapid. Then when I stop Chlorella, I went down again (plus these other factors). 

About 4 week ago I came down with a proper flu. In January I had a cold, FEV droped to 46%. After antibiotics & exercise I managed to get it up to 1.35 = 48%. I was not happy that I had dropped from 65% let alone my 55% benchmark. Seeing how the oral/inhaled antibiotic were not really effective, my psuedomonas was still heavy (dark green) and the fact was if I didn't DO something different the next immediate option was IV antibiotics. 


I stopped all the antis. Ordered Chlorella and Liposomal vitamin C. 


and started nebulizing Ionic Sliver and GSH (L-Glutathione) 3-4 x a day....
Taking 45 Chlorella tablets (200mg a day) and 10ml (2000mg) Lipo C 3x a day
(I have experienced NO adverse side effects from these natural supplements)


My goal is the 65% + Chlorella has been shown to repair tissue... will it help repair more Bronchiectasis? Was it the Chlorella that healed the Bronchiectasis in my lower lobes? We know Kalydeco itself does not repair the damage, only allows he body to repair. I believe Chlorella had played a critical part in my results.

I have today been off antibiotics for 29 days. In the first few days my FEV went to 1.43. Then a week or so later 1.50. Today it is 1.60 = 54%! Off all antibiotics!!!!!!! The colour of my PA infection has become light yellow and the mucus production is very low.This is a HUGE step forward for me because since the age of 15-16 I have been attempting to break the cycle of antibiotics, but I couldn't go for more than a few days before I became heavy chested, heavy pseudomonas again. I have NEVER had an FEV increase off antibiotics. 

Along with this change I am now able to exercise more. Grant it I have only done 2 major sessions during this period, so I can only hope to see more improvements as I get into a better exercise routine. Happy to say though I ran and jogged the distance of two ovals yesterday.. twice!!! Plus walked home. As since 2009 I never could have done that. Kalydeco is the game changer!! I now can absorb all the natural things I take, have the energy to keep on top of life.
So this is my current little experiment/GOAL: Can I get back up to 65%???

We'll see, I am so happy thus far with this progress, will update you as it happens! 

No Fear







Friday, 19 April 2013

Salt Supplementation

A Celtic Salt Farmer in France

Ok so my approach to this is not widely done. But I would like to share some thoughts on the approach I take on salt supplementation (which includes Bicarb (sodium), salt tablets any salt replacement therapy) 

For those who are unfamiliar with this topic, people with CF are commonly recommend to replace salt in their bodies as we lose salt through our skin. It's a key part of the dysfunction of CF. Indeed, this very defect is what Kalydeco corrects, salt regulation & hydration ability of out bodies. So generally when people are initially given a positive CF diagnosis it's done by a sweat test, they take a sample of you sweat and test for sodium levels. You get a score, under 40 is non-CF, 40-60 boarder line, 60- and beyond = CF. Later they go on to take blood to test for gene types and work out a treatment plan.

So I have never been given salt replacement treatment as an ongoing therapy. Certainly no hospital based ones. My mother was prescribed salt power for me as an infant, but tasted it, read the ingredients & threw it out! Started to research salt regulation/function.

Early on before she knew anything about  sodium/potassium balance, my mum switched  to a natural supplement By Blackmores. They are the makers of professional celloid mineral therapeutics. I had tablets called, S.S.P.C. they contain: Sodium Sulphate and Potassium Chloride. This is key: I had Potassium with the Sodium. To have salt therapy for CF with out potassium to my understanding is quite risky to ones health in the long term. 

Explanation why: let's start with a Cell. Our bodies are made of them. A healthy cell should have potassium on the inside, while the sodium is outside, free to circulate where it should. Here's a visual of a healthy cell...

Now with a sick cell, the sodium invades the cell, therefore displaces the potassium from where it should be. The salt should not be there, once the potassium returns to it's rightful place it frees up salt to get around where it needs to, outside the cell!


Quick Q & A

How does salt get in? Free radical damage. Free radicals cause damage to anything it comes in contact with, it's like internal rust! Letting in many different things that are not meant to be there i.e. Bad fats or salt (to name a couple)

What can help protect your cells from free radial damage? Antioxidants, Minerals & Fatty acids (are my first picks)

What ones are particularly good for helping CF (protect against free radical damage)? Glutathione, Vitamin C, Flax seed oil, Zinc, Vitamin E, n-acetyl cysteine (NAC) & Selenium. 


Fact: There is a salt regulation dysfunction with CF. What I question is HOW to to approach this problem. Hospitals recommend salt supplementation to replace the salt lost through the skin, however over the years my mother & now I have thought outside that box to come to the understanding Potassium supplementation is MORE crucial to balance the salt regulation problem. 

See the way I understand it is there is salt in the body, the skin of a CF patient can testify to that, we excrete sodium through our skin. By taking potassium it will enable the body to restore potassium where it should be inside the cells, get the salt out of the cells, then the fatty acids heal & protect the cell walls from invasions. Therefore correcting the regulation (as much as can be done in a body that has this defect), balancing the system, hydration process is assisted by the correction = less salt excreted through the skin. 

One of my main concerns about excess sodium is that it displaces Zinc. The symptoms of Zinc deficiency as taste disturbances, decreased appetite, impaired growth, but also disturbed fatty acid profiles and disturbances in immunity, inflammation and oxidative stress defence. Basically ALL cystic fibrosis problems!! Bottom line CF patients all need Zinc. Zinc is essential for numerous enzymes essential in DNA. Many of these enzymes are involved in acid-base balance, amino acid metabolism & protein synthesis. If one has a high intake of sodium, displaces Zinc, then one would achieve the above result quicker than it would happen naturally.

The other concern is the effect that excess salt has on organs. I know the common consensus is that with CF patient are sodium deficient because of how much we excrete through the skin. However I question this and ask are we deficient or do we have excessive sodium? Therefore the possible reason for excreting so much? The more salt we intake, the more excretions (higher the sweat test)? Causing the common zinc deficiency seen in CF? Then causing all the side effects of that? ... So I have a lot of questions about it all and have read a lot on  sodium/potassium balance. I have found that once I approach my health (in my late teens) with this in mind, my health turned around. 

I could go into a lot more depth on this subject, but we'd be here for hours! I encourage you to learn more about sodium/potassium balance. Most of my understanding of this topic is from the findings of Dr Max Gerson, I would suggest his work as a good place to begin.

Natural food source of potassium? Fresh Fruit & Vegetable Juices
As far as supplements go I use: Kelp tablets (which contain both sodium & potassium) or Potassium Compound salts

In conclusion, Yes I need salt. Yes, I eat salt (Celtic Sea salt), but only normal seasoning or on my margarita glass! (Mejores margarits que he tenido eran de México! xo)


 Pass the salt please! 



Best song to drink a Margarita to :)














Tuesday, 9 April 2013

CF Superhero Supplements: Selenium


"Cystic Fibrosis
Oldfield, also sighted studies speculating the 
relationship between selenium deficiency and 
cystic fibrosis. Wallach, has shown convincing 
evidence of this relationship. He reported a direct 
relationship of cystic fibrosis in the rhesus 
monkey with selenium, and zinc deficiency.
Wallach, relates a strong indirect relationship to 
cystic fibrosis in humans and selenium deficiency, 
in conjunction with deficiencies of vitamin E, and
zinc. Liver analysis of selenium in children with
cystic fibrosis showed a significant reduction of
selenium compared to normals." ~Trace Elements.com ~


Selenium. This is genuinely one of the most important medical regrets I have, but also one of the most beneficial supplements I take. The first time I heard of Dr Joal Wallach's work on Selenium I was in my late teens, I wish I had had it from an early age....

Fun fact: In Greek σελήνη Selene means "Moon". Selenium is an essential trace mineral and trace element, a cofactor for reduction of antioxidant enzymes = Glutathione an enzyme that CF patients are deficient in and desperately need. So basically Selenuim is essential helper (cofactor) for Glutathione to work, produce etc. 

Dr Wallach conducted an award winning study with Monkey's in 1978 he reversed Cystic Fibrosis. The conclusion of this study categorically showed that CF patients are deficient in Selenium and fatty acids. Some parts of his study may be offencive to the minds and hearts of those of us who have been taught and believe CF is an inherited genetic disorder (Dr Wallach does use the 'C' word (cure) in his study because he did cure it in his experience), but I would encourage you to look past this contentious issue 'the origin of CF' and focus on the result of selenium supplementation. Regardless of the origin of CF, this discovery is insightful on the deficiency we have as CF patients.

"In cystic fibrosis (CF) patients the antioxidative-oxidative balance is chronically disturbed. Free radicals were generated by bronchialpulmonal infection and additionally (there) exists a deficiency of antioxidative substances by enteral malabsorption especially (of) vitamin E and selenium. For CF patients there-fore we recommend a sodium selenite substitution therapy, best in combination with vitamin E." ~ Dr Joal Wallach ~
After reading all about Dr Wallach's work I started taking Selenium right about the time when my health picked up in my late teens. To come back from where I was looking at 3 different organ transplants took a lot of work and rebuilding. I have no doubt that Selenium played a critical role in my success. I also took extra Selenium thought all my pregnancies to prevent CF in my children, none of them have it. I understand that the earlier you start the better! As a prevention and support of the CF whole system. Over and above all else in terms of supplements I would strongly suggest you read Dr Wallach's findings and make sure if you have CF to take Selenium, Zinc and vitamin E. This is the foundation to our CF health.



Other ways to naturally boost your selenium levels is though some Selenium rich foods: 

Brazil Nuts are the highest: contain 2550μg (3642% DV) Selenium per cup


Oysters: contain 38.5μg (55% DV) selenium per oyster


Blue Mussels: 90μg (128% DV) of selenium per 100 gram

Calves Liver: 99μg (141% DV) of selenium in a 3 ounce serving

Tuna:  80μg (115% DV) of selenium per 100 grams
(fish in general also contains Selenium)

Sunflower seeds: 79μg (113% DV) of selenium per 100 gram


Oats: 45μg (65% DV) of selenium per 100 grams


Caviar: 18μg (26% DV) per ounce

Lobster (my favourite!): 50.3μg (72% DV) in a 3 ounce serving


Crab: 47.6μg (68% DV) per 100 gram serving

Other foods are Garlic, Turkey, Cod, Sardines, Salmon, Barley, Lamb, Mushrooms & Onions just to name a few!

Personally I also take a supplement. I have Selenium drops each drop contains 10mcg of Organic Selenomethionine (Selenium). One drop 2x a day. My NAC also has Selenium 25mcg per capsule. Then My colloidal minerals contain selenium too. Always make sure you take natural organic quality products and seek a health care professionals advice on dosage.

Here are some links to articles on Selenium, Glutathone, Vit E & CF:





So there you have it Selenium our CF Super Supp, I hope you learn more (that's important!) about it and chose to start supplementing for your CF. I can tell you that I am very glad I did!! I reiterate I do understand that Dr Wallach using the phrase "cure" is offencive to some in the CF community, but please look past that: the objective fact is Selenium helps CF!
Take Care xo


















Wednesday, 3 April 2013

PHAGESPOIRS Guest Blogger: 4 Years treating CF infections with Phages.

Good Morning Dear readers!!
It is with much pleasure that I introduce to you my very first guest on CF MUDDA!  A very warm welcome to Monsieur Hervé Jacqueson. Hervé is from France and is the  vice-president of PHAGESPOIRS, a foundation created that advocates (and fights) for an access to phage therapy for patients with multiresistant bacteria and /or very critical situations. PHAGESPOIRS have today about 200 people who put pressure on public authorities (through media, conferences, and formal discussions) for authorising phages use. They have more and more patients with CF contacting them seeking advice. Hervé himself has CF (deltaF508 and R347P) and has had the good fortune to be treated with bacteriophage therapy for 4 years, his experience is remarkable and I asked if he would mind being a guest on my blog to talk about his experience and raise awareness about this amazing treatment. Thankfully Hervé has kindly obliged! 



The following is our interview. I apologise if I missed any questions that you may have wanted answered, but you may contact PHAGESPOIRS directly yourself (in English, no worries) by going on www.phagespoirs.com or you may like to stay up to date and show your support by joining the facebook group: www.facebook.com/groups/phagespoirs/


Welcome Hervé! Thank you so much for agreeing too talk about your marvellous experience about being treated by Phage therapy with CFMUDDA. It's a privilege to hear some of you thoughts & about your experience in Tbilisi. 

Faye Hello, how are youThank you, it is a pleasure to see that we share the same experience at the antipodes of our beautiful planet. I hope that the experience will be successful for you. I have visited your blog, very very interesting, both in terms of personal experienceat the scientific level. You do an outstanding job to make know the phages

Thank you for your complements about my blog, anything for CF!! If you don't mind, here are some questions I would love to ask you:

Did treating your bacteria with phages make you Pseudomonas "free" or just controlled it to a comfortable level?

I made three intravenous antibiotic treatment in four years instead of every three months before it
Did your lung function improve at all after treatment? 

My lung function was low when I start Phage (28%), I can tell that I've a big change on that but it's stabilised at 30-35%. Just a little bit better but stabilised.

Did another bacteria take the place of the strain that was treated? (for example: controlled Pseudomonas, but got aspergillus)

Yes, a mycobacterium has developed, and no phage was developed for treatment. But its effects are less destructive than Pseudomonas

How often do you need Phage treatments?


I do about three days of treatment every month, with two millilitres phage's cocktail (about 15 different phages, treating bothPseudomonasstaphilocoques and the stretocoques)  per day

Did you have any adverse/bad reactions from treatments?

Yes, with bacterial lysis, I feel, about 24 hours after having started treatment, a kind of asthma with breathing difficulties on exertion. By cons once this happened and after expectoration, I feel a real release in respiratory

What are you thoughts on Phages in general for treating CF?

Phages are, for me, much less harmful than antibiotics. Even if there are side effects, they have nothing to do with those caused by antibiotics.

So you needed antibiotics since being treated with Phages? 

Yes, I redid antibiotics sincefor mycobacterium. But we must also say that phages and antibiotics are not incompatiblesBy a process of selection, phages render the bacteria less resistant to antibiotics, thus increasing their effectiveness. Antibiotics are, for me, complementary phages

Why did you chose Tbilisi over Poland? (I ask because Poland is cheaper & closer to you, there must be a good reason!)

This is due primarily to the television. I saw, in 2008, a report on the Eliava Institute in Tbilisi, then I contacted themIt was only later that I learnt of the existence of this centre in Poland. Poland is more discreet on the subject, the phages being out legislation in the European Union





What is difference in response time to improve the infection using phages vs Antibiotics? 

Unlike antibiotics, phages act faster. Their multiplication is exponential. This is why the first two days are almost no effect. But after a strong bacterial lysisoccursThe side effects of this lysis (death of bacteria) is asthma, strong enough, and difficulty in expectorating. but after a few efforts to spit, you feel a sense ofcleaning, found also with antibiotics cures.



How quickly after treatment does the infection return if ever?

I do cures every month in order to control the infection. But I continue to spit infected but in small quantitiesAfter a month of treatment I feel the need to clean.
How are Phages administered?

I take the phage by aerosol nebulization with the same I use for antibiotics. I took 2ml per day for 4-6 days, depending on my tolerance. I also take phages per drink because we eat throughout the day a lot of spit and infection thus affects the digestive tract. This improves my intestinal floraMore passing blood phagescan reach the lungs and deep cleanBut on this point nothing to prove.

I take phages for the first time in aerosol


Can you share any impression of the Tbilisi phage therapy centre for those who are hesitant to make the journey?

In 2009, I was very well received at the Institute of Eliava TbilisiI was one of their first western patient and the first CF. Since I know that unfortunately businesshas been put in place and it must be very vigilant on tariffsIt is best to already have the quote from before to avoid any unpleasant surprises.

Do you find travelling to Tbilisi safe?

Georgia is a post-Soviet country, so very exotic ... People seem quite cold Exterior but I've never felt threatened or in danger there. In 2009 the war against Russia had just ended but there was no sign of tension. In view of the testimony of others who have been there sinceit is a country that has changed a lot and it is open to the world.

the gentlemen with me is in front of Tbilisi Orthodox Cathedral, is responsible of the CF Centre in Tbilisi


Did your appetite, digestion or weight improve/stabilise at all?

My appetite is better, and even though I'm still skinny, my weight since reached a reasonable level to 172cm 55kgInfection decreasingthe appetite returns.This is a remarkable change.

Have you experienced any Cough changes?

Yes actually I cough a lot less than before, especially at night which helps to recoverAnd we know that it can sometimes be very difficult. Sputum also hugely reduced.

Has doing phages improved on quality of life?

Pseudomonas, before phagetired me  a lot. I left some at home and I spit throughout the day large quantityToday I drained twice a day and I can go out, have a social lifeI could even work in the past three years in a local newspaper. A very great experience and very rewarding on a personal level



How far away do you think Phage Therapy is from being used in France's hospitals? 

Unfortunately and for the first trials started, I would say that we cannot find the phage in France pharmacy before 10 yearsIt's very long and I think most of the patients I work with can not wait that long. We must therefore find alternative solutions.
Can you tell us a little about the work you do at Phagespoirs?

My role in phagespoirs is primarily to bring my testimony about my experience with other patients. But also to testify at medical forum to popularise this therapy and make it known to the greatest numberOtherwise Phagespoirsunder the leadership of Dr. Jerome Larchewho is also my brother, also launched in basic experiments on research phages so that they be available as soon as possible, but it is a job that will be long.

Thank you so very much for your time and willingness to share your story with us Hervé! All I can say is I am completely in awe of your fascinating experience (and to be completely honest, a little jealous!) After hearing your story and immersing myself in information about Phage Therapy I am determined to be treated myself (even more than previously)... I wish you all the very best at PHAGESPOIRS, your all doing such important work there ( I hope to do the same for Australiaand of course your continued success with Phage Therapy! Take care,
merci beaucoup! xo

Thank you, It is a pleasure to share my experience with you and your readersGood day and good luck.

Hervé


Remember to contact Hervé in (French or English) at PHAGESPOIRS email: phagespoirs@gmail.com


Hervé appears in a recently made French documentary on Phages