The Whirlwind is Slowing

I haven't had to time to update in a while. It's been a whirlwind here with a couple of family deaths, and now trying to catch up and get back into life. I really didn't think anyone would notice, but I came back with a ton of comments. So, for those of you that do check in, sorry for the absence! I am grateful that our story can help some of you out there!

I am also truly grateful for the last two years. It's been TWO YEARS this month since my girls have required antibiotics for any infections! How awesome is that! Plus, they have become very RARE! Yes, I said RARE! There is hope! Don't give up. You will come out stronger, trust me!

There were a few questions from readers, so I'm going to try to answer them as best as I can. Just a reminder, that I AM NOT a doctor, this is just my experience and everyone's experience is different! It can be serious, and only you can determine if you need medical care. Here it goes:

Questions from a reader #1:

I noticed your pics of a boil before and after antibiotics. Obviously, it had some effect, but was not permanent and you've still had recurrences.

So, just curious:

1) What antibiotic did you use and did you use the full 10-day course?

Answer: We've used both Bactrim (septra), Clindamyacin (sp?) and IV Vanq (which is vanquomyacin, I think). We've always taken the entire 10 days. We've even had it prescribed for longer and when I was in the hospital I was on IV Vanq, then oral Bactrim and Clindy when I returned home. We've always taken all that was prescribed.

2) Given that it didn't fully eradicate the staph, would you try antibiotics again? Knowing that you're weighing the risks between using it may kill it all, or not and make it more resistant...or not using it and possibly allowing it to spread if other methods don't work?

Answer: I am not against antibiotics when used properly. I think we use them too much and our country is as a whole unaware of other options out there. The big drug companies can pay millions for testing, but unfortunately supplement providers can't afford this. For this reason, we've had to try them ourselves. Thankfully, you can find other's experiences online to compile with your own.

I try to remedy it at home if at all possible because we've used antibiotics, and for us they would help that one infection only to be followed by another. IF one of us got an infection that was not responding to our home treatments, or that got worse, I would go to the doctor for antibiotics. Because we've already gone this route, without great results, I'm less likely to follow it unless absolutely necessary. Home treatment can take a week or so. If it's a large boil, once the drainage starts coming out, it should start getting better quicker. Obviously MRSA can be severely serious, so if it were ever accompanied by a fever or body aches I would go to the ER right away. Those symptoms are evidence that it's spreading and becoming more severe.

3) Do you know of anyone who has been permanently cured using a certain antibiotic? Or any other method?

Answer: I know of no-one that has been permanently cured with any method. My doctor even told me NOT to ask how to get rid of it, just to be responsible to keep it from spreading it to others. This doesn't mean there is no one out there. I do know that some people get one MRSA infection, take an antibiotic for it, and never get an infection again. This is the typical case from what the doctor has told me. One doctor in the ER said my case is extremely rare, but I'm beginning to wonder since there are so many of us online trying to find out more. From what I've learned, it seems that once you have an infection, you have that bacteria living on your skin. Some people have it living on their skin and never have an infection. Puzzling, for sure!

Questions from Reader #2:

Hi there! I just stumbled upon your blog and (though I'm only through reading the first 10 months or so) I wanted to thank you SO much for taking the time to put this information online. I have had 4 MRSA boils ("high growth" CA type) in the last 6 weeks. I had my first boil surgically removed and treated the second with a sulfa antibiotic. I would prefer to avoid going back to the doctor since the two I have now are tiny and I have found the doctor to be of little help. I have considered going to an ID doctor but the referrals at my HMO take at least 6 months.

I've read your disclaimers about not being a doctor and fully understand them, but I was wondering if you would answer a couple of questions given your experience? I hope to get through reading your blog soon, and realize I may have missed some things, but since I have 2 boils right now I figured I'd try to get in touch.

If a boil clears with a treatment of Manuka honey (what I'm currently using) and time, do I need to worry about any type of internal infection or seek treatment from a doctor?

ANSWER:
From what I've been told from my doctor and the late Dr. Hudson (MRSA specialist - microbiologist researcher), the signs of internal infection are fever, aches and pains, lines going from your infection site towards the heart.

What type of tea tree oil do you use and how do you go about diluting it?

ANSWER:
We have not diluted the tea tree oil. I have read you can dilute it in olive oil. We have used a few different brands, whatever I can get for a good price, but that is pure. Tea Tree Therapy is one we've used. I have to say though, we ran out of tea tree oil, but I had bought some Manuka oil to see if it helped. It does an awesome job! Even better than tea tree oil. It ranks up there with the Manuka honey. I haven't bought Tea Tree Oil since.

Are your girls allergic or irritated to tape/bandaid adhesive? Have you found any solutions for this? I have to say, this is my number one problem in dealing with the MRSA. After a day I have a bandage shaped eczema patch.

ANSWER:
Funny you mention that. Two times over the past summer my 9 year old had bike/scooter accidents. She really tore up a knee one time and her elbow the other. We've never had trouble with an injury getting infection, which is kinda strange. It's always been random places. However, both of these injuries required large bandages. I used a stretchy gauze, one that is stretchier than most and she broke out in a rash all around the injury, where the bandage touched her skin, that I had to constantly treat with honey to keep it from getting infected (the rash, not the injury). I have found that bandages with "stretch" to them affect her. I can use just regular roll gauze that's cotton. It stretches from how it's put together but is 100% cotton. Then I use paper tape on top of that. I have found some types of band aids break her out too. We typically use Band-Aid Ultra Strips for smaller places. She doesn't have any trouble with those. Hope that helps!

Thanks again for all the concern and prayers. It's so encouraging to know our story can help others! For those that have contacted me in hopes to contact me personally about your struggles, I am working on getting an email set up for this site. Bear with me.

Gluten Update

Life's been busy with moving and school, but we are doing good. So thankful for all the good days.

My 5 year old's test results came back. She does have a gluten sensitivity (she tested positive for the IgA - the response to an allergen, for gluten) and she has 2 alleles for the gene they've found related to gluten sensitivity. That means that my husband and I both have at least one gluten sensitivity allele, and chances are my 9 year old has at least one. My now 9 year old did test allergic to wheat when she was 2, so it makes sense. Still trying to figure out what all the results mean. She also tested positive for ttG, which is what doctors look for first for celiac. She did not have the celiac gene though. I'm planning to call the testing company this week with all my questions and will update you then.

Also, my husband's uncle died of colon cancer a while back, and another one now is very ill with colon cancer. I also have a grandfather and his two brother's that died of colon cancer. Although I don't know for sure, I'm really wondering if gluten is the common thread for these issues. It messes up your digestive tract, so maybe it was an open door for cancer. Don't know, just thinking and doing some research.

All of this to say, we are now a gluten free family. Both girls are also milk free for now, and our 5 year old is also egg free. I am so amazed at the difference it has made in her skin. Her eczema had gotten so bad really quickly, and her skin is now supple and she only has a few little spots of itchiness! Whoo Hoo!

We just started going back to our alternative doc. We are finishing up allergy treatments hoping that without the gluten causing their bodies to be super-sensitive, they will respond well and other allergies won't be as bad.

I am finding I have to make things from scratch. Even gluten free things from the store seem to itch their throats or cause some minor reaction. I'm not sure if it's something in the processing, or an allergy we don't know of yet.

Thanks for following our story. For all of you in the thick of it right now, don't give up! Keep researching, asking questions, and praying for direction. There are so many ways to go, we need the Lord to point us in the right direction for each of our families!

Study: Baths with Bleach Help Kids\' Eczema

We are going to start these weekly. Since we stopped swim team at the end of the summer, we've seen a re-emergent of a few spots. Nothing major, small little things, but we want to prevent more. We'll see how it goes. I found this article interesting...

Study: Baths with Bleach Help Kids\' Eczema

Update...Gluten Free, Dairy Free, Egg Free

We are so grateful that our MRSA infections have been few and far between. We still have a daily regimen we follow, but it's not ruling our days! We are still hopeful that one day, it will be a distant memory!

Lately we've been dealing more with getting to the bottom on our 5 year old's food allergies. We've seen improvement in her, but there is still many periods of constant stomach pain and eczema outbreaks. We followed doctors orders and put her on a dairy / casein free diet for 30 days. The first week or so was amazing, her skin was getting better and her stomach wasn't hurting. But later in week 2, these symptoms returned. At the end of the month, it occurred to me that she didn't have any bread (gluten) for that first week or so (simply because I didn't know what bread products didn't contain a milk product), and maybe that was a factor, not just the dairy.

I asked a couple friends that had recently discovered their children's gluten intolerance how they tested them. There are so many tests that aren't accurate and I didn't want to waste more money. She's already had a saliva test for milk and gluten that came back normal, and a stool test that was normal for other issues. Both of these friends used the same lab for the testing and finally got results, and since changing their diets, they've seen dramatic results in their children.

We decided to go ahead with this testing. If anyone is interested, you can find more information at www.enterolab.com. We also decided not to wait for the results to put her on a gluten free, milk free, egg free diet. Her skin was horrible on her feet, with cracks that were affecting her walking. It's been 6 days now and her skin is clearing up and she hasn't complained about her tummy once! I'll keep you posted once we have the test results back. I'm hoping she won't have to stay off all three, but if she has too, it's worth it so she is healthy!

Update and questions answered...

The girls are still doing great. My 9 year old realized today that we haven't had MRSA all year (2009). She found that encouraging and neat to say "all year". I am truly grateful. We have really enjoyed these months...I can't believe I said months! We still follow the same protocol. I have cut back a little on some supplements to see how they do, and have still had good results. I am amazed!

I had a couple questions from comments lately, so I thought I'd answer them. One was about StaphAseptic. I did purchase this once and used it. It is very expensive, I thought, and one of the "inactive ingredients" is Tea Tree Oil. I've known tea tree oil does wonders with MRSA, but I think they aren't able to claim that it helps MRSA on the label. Of course it takes lots of money and trials to be able to label these claims. After seeing that, I felt like that was the true "effective ingredient". After that one purchase, I just decided to use tea tree oil instead of paying more for this small tube of antiseptic that goes quickly. I don't really remember how well it worked. I must not have been too impressed.

Another question was about whether we have tried Allimed. I have heard about it, but have not used it, or researched it, so no opinion so far.

My favorites for topical treatment still are Manuka honey, colloidal silver, and tea tree oil. If we see any suspicious spots, we use this combination. We even use the Manuka honey ointment on any cuts and abrasions to prevent infection.

Oh, this is a great product!

ACF from Buried Treasure (stands for Advanced Cold and Flu) is a great product. Whenever the girls start not feeling well or have the sniffles, I give this to them and it really helps fight it off. www.luckyvitamin.com has it at a good price.

No news is good news!

Just a quick update...we are doing well. We've been busy with the holiday's, but overall really good. Dr. Hager has the girls on some immune boosting supplements and I can tell a big improvement in their skin and infections! We also add a couple supplements we have found helpful. They haven't even been sick since the fall (except a couple "not quite right" days, but didn't develop into anything). Truly a miracle! Fall is our typical sick season. Here's what they are taking daily that seems to be keeping them healthy. A lot of this, they have been taking for a while, but a few are new. I hope to be able to back off slowly and see how they do.

Tumeric - 2 pills, 2x per day (helps with infection / inflammation)
Minitran - 1 pill, 1x per day (minerals to help with eczema)
Thymex - 2 pills, 2x per day (super immune boosting - stimulates thymus)
Primrose Oil - 1 pill, 1x per day (helps with eczema)
Probiotics - 1 pill, 1x per day (helps with healthy bacteria)
Gut Flora - 1 pill, 1x per day (helps keep healthy bacteria in gut)

I think that's it. More later...thanks for reading.

UPDATE::::2/6/09 - I just realized I left one thing off that list above.

Milk Thistle - 1 pill, 2x per day
We also cut out the Gut Flora to see how they do now that they have cleared candida
We cut down Thymex to 1 pill, 2x per day for the last month, still good results