Alternative treatments worked for me!

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
kimmies
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Alternative treatments worked for me!

Postby kimmies » Wed Jun 06, 2012 12:47 pm

My story is I contracted lyme disease from a tick in Atlanta 11/2009 I was denied positive lyme serologies by multiple doctors telling me lyme is not in the south. Apparantly the ticks dont cross state lines. I went months undiagnosed and was having seizures and unable to walk. I was finally diagnosed with lyme but because of the delay, treatment was very difficult. When lyme goes chronic, it is not easily treated and is not cured in the 30 days alloted by the CDC. I am an RN, and the medical profession has destroyed my faith.

So I required months of ongoing antiobiotic therapy, mostly IV thru a PICC line to regain the ability to walk and stop the seizures. I came down with severe c diff Oct 2010. I fought it multiple times with flagyl, vanco, etc. I ended up doing multiple fecal transplants which really did help. I still tested positive for c diff at times and still had IBS symptoms.

I was on multiple probioitcs to help control the IBS symptoms: VSL#3, and florastor. If i tried to stop them, the IBS would return badly.

I ended up seeking alternative treatment. I was able to get Mutaflor which is a benefical strain of E coli patented in Germany. Our FDA no longer allows Mutaflor in our country saying it is a biological product. (Arent all probiotics?) Apparantly it was too helpful for Chrons/UC patients and put too many in remission. There is not enough money to be made on this product. Luckily I was in Germany and bought Mutaflor and brought it back with me. It is the one and only probiotic that made me 100% back to normal within days of taking it.

The other thing I did was use near infrared light therapy to stimulate my own immune system. I was very immunosuppressed from the lyme diseaase and the antibiotics which may be one reason I was not able to get over the c diff. This too has been instrumental in my recovery from c diff and lyme.

Today I am off all probioitics including the Mutalfor. I no longer have IBS symptoms and am feeling much better. Mutalfor is still available in Europe and Canada. I do believe Mutaflor and my own immune system are what allowed me to recover from chronic clostridium difficle. The lyme has proven much more stubborn but I am making tremendous progress with that as well.

As a medical professional myself who was against alternative medicine, it has changed my life. I am no longer close minded to alternative therapies. I am not against antibiotics either. I am however, very guared and skeptical of tradional medicine based on my own experience dealing with two chronic persistant infections at once. FYI: Post lyme syndrome does not exist, it is active infection requiring treatment.

For those of you still struggling, dont give up. I thought I would never get rid of this infection. It is stubborn and takes time. Sometimes more than one treatment approach is necessary....it was for me. My top 3 treatments were: infusions, Mutaflor and supporting a healthy immune system. This was done after numerous rounds of antibiotics first. Best wishes.

Bobbie
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Re: Alternative treatments worked for me!

Postby Bobbie » Wed Jun 06, 2012 2:23 pm

kimmies,
I remember you. Thanks for your story. I agree - nothing is "guaranteed" when it comes to many diseases - especially C. diff. We are glad you found the right combo for you. The medical professions (as others) can sometimes be "close minded." We are glad you found your "own cure." Kudoes to you.

A caveat: this site doesn't promote or advocate any "cure" but lists what worked for others. It is up to you to find what works for you.

beth22
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Re: Alternative treatments worked for me!

Postby beth22 » Wed Jun 06, 2012 2:50 pm

Kimmies - Can you explain about your infrared light treatment. I have read some stuff about using light as treatment, but don't know how it works or who does it.

beth22
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Re: Alternative treatments worked for me!

Postby beth22 » Wed Jun 06, 2012 2:58 pm

Regarding the Mutaflor - I found it online. Is this the product that you are using?

http://www.amazon.com/Mutaflor-Caps-Day ... B003IX9L8S

kimmies
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Joined: Fri Nov 26, 2010 10:43 pm

Re: Alternative treatments worked for me!

Postby kimmies » Wed Jun 06, 2012 3:20 pm

Hi Beth,

Thank you for the well wishes!

I did a lot of research on LLLT Low level light therapy. Near infrared wavelengths of light, especially 880nm, have many effects on the cellular level of the body. One being it is stimulating to the immune system. Research showed that 880nm increases WBC and natural killer cells which is our bodies defense against pathogens. I treated myself and ordered my LED light online. There was not a set protocal so it was a lot of trial and error. It is possible to over treat and have adverse reactions. The research I did was on LLLT and immune system activation.

Here is an article I found, although I was not treated by this Doctor:

http://www.drkaslow.com/html/pda_-_phot ... action.htm

Yes that is the Mutaflor. I do not believe they are allowed to ship it into the US any longer per the FDA. Canadian websites will not ship here either. It also requires refrigeration but can go 24 hours without it. Here is what I found on the Mutaflor website:

Mutaflor is currently discontinued from the U.S. market respecting the FDA’s decision on the classification of the product as a“biologic” instead of it’s former status as a “medical food”

Please note that the discontinuation of the product is solely attributed to the FDA’s classification of the product and a final decision is still pending.

We will do our best to bring Mutaflor back to the US market as soon as possible while respecting the FDA.

Is There Anything I Can Do?
If you would like to provide a testimonial of your use of Mutaflor, please email it to info @ medfutures.com

If you found a place to purchase it, please let me know as I would always like to have some available if ever needed.




Best wishes to you as well and thank you.

amyc
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Re: Alternative treatments worked for me!

Postby amyc » Fri Jun 08, 2012 12:17 am

I was able to order Mutaflor from a health store in Canada and had it shipped to me in OK. It was expensive because I had to pay express shipping. I had to call the store and order it that way...can't remember the name of the store though.

beth22
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Re: Alternative treatments worked for me!

Postby beth22 » Fri Jun 08, 2012 12:39 am

Amy - Did the Mutaflor help you? I've spent so much money on supplements that I either couldn't tolerate or that didn't help me, that I hesitate to get yet another, but I know you are sensitive to similar things as I - like Florastor, so I wonder if it gave you any side effects.

arose
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Re: Alternative treatments worked for me!

Postby arose » Fri Jun 08, 2012 12:56 pm

I just ordered Mutaflor (I'm Canadian) and I'm hoping it works out! I've heard good things about it from a few people and my doctor mentioned it when I saw her. Hoping for the best! I will let you know how it goes.

Kathy George
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Re: Alternative treatments worked for me!

Postby Kathy George » Fri Jun 08, 2012 4:01 pm

Arose, be careful what you wish for....... Each medication may not be well tolerated by all individuals. If it works for one if may not work for another. Most of us inherited C-Diff due to medication therapy plua all of the side effects. I get alarmed when I read about jumping onto the bandwagon on impulse. Every since I suffered from this beast I have a huge hang-up on all medications whether over-the-counter or supplements. Take care and be cautious on what you place into your body. At times, “Less is More”. As always, above statement is solely my opinion!!!
Kathy
I ask not for a lighter burden, but for broader shoulders.

JenniferH
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Re: Alternative treatments worked for me!

Postby JenniferH » Sun Jul 08, 2012 2:08 pm

Just curious on the staus of mutaflor...is it working for thise of you who ordered it?

kimmies
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Re: Alternative treatments worked for me!

Postby kimmies » Sun Jul 08, 2012 8:56 pm

I would like to know if anyone has been able to purchase mutaflor here in the USA? I would love to have a back up supply in case of emergency so if anyone has a reliable source, please post or PM me.

Here is a great source of information on Mutaflor and its benefits. http://en.wikipedia.org/wiki/Mutaflor

arose
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Re: Alternative treatments worked for me!

Postby arose » Mon Jul 09, 2012 10:45 am

I spoke to my doctors in great detail before taking Mutaflor and it's working really well for me. I've been feeling great since I started taking it!

Bobbie
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Re: Alternative treatments worked for me!

Postby Bobbie » Mon Jul 09, 2012 10:56 am

I agree with Kathy about multaflor, but as long as you check with doc. I read hyperlink - sounds good; hope it continues to work.

bback12
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Re: Alternative treatments worked for me!

Postby bback12 » Wed Jul 11, 2012 4:40 pm

The Multaflor sounds awesome! You said you got this is Germany? I also battle c-diff and I also have Crohns so it sounds amazing to me!

Beth- I believed you messaged me about this!


Does anyone know where I can find this without having to go to Germany ( Can't afford it, can't fly)

beth22
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Re: Alternative treatments worked for me!

Postby beth22 » Wed Jul 11, 2012 5:47 pm

It is available in Canada. Someone said they called a Canadian pharmacy and ordered it from them and they sent it. It's in one of the posts here. I tried getting it on Amazon, but they won't ship to a US address. So, if you know of someone who is traveling to Canada or Europe, perhaps they can bring it back for you.


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