additional info that I learned from naturop.

    • March 9, 2010 at 6:42 pm

      Well, this I read while researching, steroids, imuron, cellcept cytoxan etc. cause candida. Alice posted that during her protocol they gave her anti fungals, that must be why. So any of us that have had steroids or the imunosup. probably have candida in the gut. Even if we take probiotics,prebiotics, it is not enough unless we take an antifungal. About the probiotics, enzymes ets, for instance we are told to eat yougurt (activia) well, while that or other supp are probiotics, they are derived from milk. You have to have human ones (if you are allergic to dairy as we are and most w/ autoimmune probably are) The naturop recommended these antifungals, I said I will do them as well as nystatin. He agreed. The nystatin is a six week course with 4 days of die off and feeling sick. Charcoal will help with that. I also said how to we fix the gut that is leaking as a result of the candida, he said the pro, pre biotics, digestive enzymes stomach enzym and a bunch of other things.

      Anyway, so many things were off besides the stool sample, vit d, magnesium, basically a host of vit and min. caused by the leaky gut. As well, this messes up hormone production etc. All of his hormones were off. The candida, poison, is the cause of this because it makes all of the organs have to work in overdrive. The interesting thing was, THE FLUCTUATION OF THE HORMONES puts you into hypo and then hyper thyroidism. It is so connected. The cidp really has nothing to do with these other gastro issues (unless of course there is gastroparesis) All of theses hormonal and mineral, vit issues and candida have to doo with insomnia issues, mood, depression. The physical affects of the illness change the body chemical make up these are the physical stressors, then there are the emotional stressors that do a number on everything, it is a constant cycle.

      The best advice I have is to get allergy testing by way of cap rast (checks ige levels, instant reaction) and elisa, which tests igg iga, a delayed response. Then you will know what to eliminate as to what causes triggers, as well you will eliminate the poison production that leaks out. Also get the stool sample to see if candida is present. So many gastro, sleep, brain fog, cognitive, tired, fatigue, headache issues could be eradicated.

      Isn’t it funny that many of us do have in common brain fog, sleep prob., fatigue, headaches, stomach issues We all do share that thread. What is a simple 6 week course of nystatin could help? We will let you know, we are going to staRTthe natural stuff tommorrow and make contact w/the gastro for the nystatin.

    • Anonymous
      March 9, 2010 at 6:56 pm

      [FONT=”Microsoft Sans Serif”]…actually i am still taking them dawn– in my case i take fluconazole which is similar to nystatin. in fact, i googled them both together along with leaky gut and they are pretty interchangeable… i have to take it for 6 months post treatment–
      let me know if you have any trouble getting a Gi doc to prescribe it–


      p.s. i am big on the gut health thing too, have been for a long while. [/FONT]

    • Anonymous
      March 9, 2010 at 7:23 pm

      Hi Dawn,

      I have had allergy testing done – also hair analysis. These were done years ago when I had just come down with CIDP.
      I was tested for airborne, chemical, food, candida, etc, etc. My candida test on my arm came up like a ringworm – yuk!
      Also, the airborne allergies; dust, dust mites, animal hair, feathers, pollen, grasses – you name it, were all really positive. The only thing I didn’t have a reaction to was gum trees would you believe! Which is just as well, because I am surrounded by them at home! I have found that when I am exposed to these allergens – my CIDP sypmtoms feel worst.
      So, I am a really allergic person.
      I also, had allergic reactions to certain chemicals as well – Which I have to avoid.
      Before I had a diagnosis and was feeling really unwell, my doctor (who is an environmental doctor) used to give me vitamin injections or sometimes I would have them in a drip that would take a few hours to run.
      Good luck!

    • Anonymous
      March 9, 2010 at 7:43 pm

      Thanks so much for your insight, will need to do some research on my own.
      You did answer alot of the questions I had though, and for that I thank you!!
      Ms. Judy

    • March 10, 2010 at 2:21 am

      I get all my probiotics from plain yogurt. I make sure the label says live and active cultures or that it meets the National yogurt association criteria for live and active yogurt cultures.
      I know Mountain High, Trader Joes and Brown Cow are some of the best.
      Whatever yogurt I buy I make sure it only contains cultured milk. No sugar – No Fruit and it must be plain. I usually buy lowfat but sometime I switch to whole milk.
      I add cinnamon or blueberries or other fresh fruit, but I like it plain mostly. If the label says high fructose, sugar, syrup or anything else then it’s not yogurt.
      Kefir is nutritionally superior, but only if it is plain and passes the same qualifications as yogurt with the cultures and no sugar. Sucrose, sugar or high fructose just defeats all the healthe benefits of cuultured milk,
      I am not lactose intolerant that I know of, but certain websites claim that the lactose intolerant can consume yogurt beneficially. For a lactose intolerant individual to consume yogurt I believe it would have to depend on the degree of intolerance and for children or adults it could be too risky unless medically supervised. Probiotics in pill form would be probably be the best route

    • March 10, 2010 at 8:54 am

      Hi Katy,
      Kevin hates yogurt. Lucky for him he has the milk allergy, because I was going to make him start eating it 😀 I am sure he is not going to be too happy having to swallow all of these supp. pills for the next six months and then maintain with others down the road!!

    • March 10, 2010 at 2:13 pm

      I applaud you for doing the right thing Dawn. Eating something you dislike disrupts the digestive system I believe. If I didn’t like it I would not touch it, and especially when it comes to children I would never make them eat something they find unappetizing no matter how beneficial.
      Usually there are alternatives out there for most things.
      I sure hope Kevin feels better real soon.

    • Anonymous
      March 10, 2010 at 4:52 pm

      Dawn, very interesting stuff. I really hope it works. Keep us posted. I am more into the natural route than medicines. I strongly believe in the hormone connection. I was reading something today about neuroendocrinology. It said that damage to the neuroendocrine system can cause adrenal exhaustion and hormonal imbalance. I believe that this is the root of all of my problems. I have felt a strong hormonal imbalance this whole time, and have physical symptoms that suggest this. Why noone will look at this is beyond me? I am waiting on some hormone tests so we’ll see.

    • March 10, 2010 at 5:16 pm

      Hi Jessica,
      The saliva test is what we did for the hormones, it was from a neuro science lab. Not sure if I wrote this before as I have been all over the place writing the things that we are learning, so if it is a repeat sorry. Apparently it starts at the top, first line of defense, tonsils adenoids (ours are gone!) then the stomach is the next line of defense, the biggest one, the home of the immune system, well, thats screwed up to and essentially spits out toxins via the yeast, and hystamines that cause allergies. These toxins are NEUROTOXINS Then after the stomach defensive system we have back ups, liver, kidneys, ADRENAL, PITUITARY THYROID. because the neurotoxins in the blood exist, these other defense mech have to work harder. Hmmm…. kind of sounds like what happens to nerves and muscles with gbs/cidp, the working nerves/muscles do their work and the work of the “broken” ones. Anyway getting back to the hormone issue. Once you reach the pituitary/adrenal,thyroid with all of these imbalances, cortisol production starts going wacky, then other hormones go wacky. our neonephrine and all of those other ones were all high. This is the start of hypo I think and then hyper thyroid happens when things go up and down. This naturopath assures me that if you can get the gut to function by stopping the candida, creating a new mucosal lining w/pro/pre biotics you can start getting things back on trac. We don’t live too far from each other, I can meet you somewhere and show you all of the tests, charts for hormones etc. It is fascinating and then you could have a beeter edge than we did because you would know things going in. let me know

    • Anonymous
      March 11, 2010 at 10:15 am


      I thought about that…actually meeting with you or getting the name of your naturopath. I am getting frustrated with the doctors, and I want to treat the root of the problem and get better… don’t we all, I guess. I will send you a PM about meeting up sometime soon. Thanks.