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An Interesting Story And Introduction


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52 replies to this topic

#46 foam

 
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Posted 12 April 2013 - 01:12 AM

Well I now have zero gut pain so it seems I did/do have small intestine overgrowth as the (one of) the reasons my gut hasn't been able to heal. Obviously I also have an auto immune condition as a result and that's the main problem but it'll be good if I can at least get the gut sorted and gain some weight more easily.

 

I'll probably take another similar antibiotic to metronidazole in a couple of weeks after I finish this just to make sure I'm on top of the bacteria but this stuff is working quite well. Most drugs I've taken haven't been effective at doing much and diet alone wasn't cutting it. So I rate this as pretty good stuff.


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#47 foam

 
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Posted 13 April 2013 - 02:09 AM

What am I up to now? day 4? now have zero symptoms from the metronidazole and still no gut pain, no problems eating fruit. Even super ripe figs!. Eosinophilia is still obviously high but I feel really powerful in my muscles and light on my feet. Best I've felt in a long long time. Now I'm not sure what to do... will I take probiotics as I come off this stuff or will I not and if I do what cultures should I take to repopulate my gut or will I let it repopulate naturally... I know from my past experience that some cultures moderate my immune system in a good way but I suspect others send it in the wrong direction. Big decisions because I don't want to get another bacterial overgrowth. I'm thinking the smartest thing to do is probably green juice for a while and some sauerkraut. 


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#48 foam

 
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Posted 24 April 2013 - 11:04 PM

Hey guys, hope you are all battling on well. I'm doing ok, improving overall. I seem to be effectively cured from bacterial overgrowth / imbalance after the metronidazole. I have no upper gut pain any more and my tongue is looking quite good rather than totally white and crusty. What I did was take the metronidazole and then took only natural probiotics I could trust which were mostly from home made sauerkraut. I was starting to think the strong soil based probiotics I took earlier on had gone out of control so I went more gently this time. My tongue is by far the best it's looked since I started paying attention to it a year ago.

 

I was still having a slight problem with high sugar fruits last week but each day is better and now I would say I'm totally good with fruit as of today. My stools are no longer "sticky" which I will take as a good thing and I can't even remember the last time they weren't. I've started to feel high fat meals change the way I feel and I can feel the "heat" in honey all the way down when I eat that (just been trying it the last week). So something has changed, got now clue what but something.... 

 

I had some new blood tests yesterday, I'm not sure if this Kimura's disease with resolve with my improving gut or not but I guess time will tell. I'm still on Zyrtec every day to try and get my IgE level down.


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#49 foam

 
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Posted 07 May 2013 - 12:18 AM

Little quick update, had an IgE result the other day at 2800. So it's gone 4100, 1900, 2800. The 1900 I think was an anomaly because I was having a bad reaction at the time and I think most of the IgE were bound to tissue rather than being in the blood. This time everything was stable so I'll take that as a measure of my real improvement.  

 

My eosinophil levels while everything is "normal" has gone from  (2012) 2.2, 2.4, 2.1 (2012) (2013) 1.8, 1.7, 1.8, 1.5 (2013). Still keeping off the steroids but am doing 10mg Zyrtec in the morning and 10mg Loratadine at night. Those are to lower the IgE levels and stop me itching and having sores on my skin. I'm following the SCD diet properly now and will just continue what I'm doing until the improvement takes me all the way or it stops in which case I'll move up to stronger drugs but for now everythings going well. Still have no gut pain so that at least seems to be healing


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#50 foam

 
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Posted 29 May 2013 - 09:11 AM

Hello! yet another quick update. I'm still slowly improving. Still doing 10mg Zyrtec and 10mg Loratadine (zzzzzzzzzz very sleepy though). I'm going to replace one of them with suplatast tosilate (IPD-1151T) as soon as I can source some of it out of Japan. That should get me to the next level of safe immune suppression. My gut is really good these days and gaining a little weight, got another set of blood tests next week, so hoping for further black and white on paper improvements 


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#51 Lori2

 
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Posted 29 May 2013 - 02:30 PM

Thanks for the updates.  It's always encouraging to hear when someone finds some answers.


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#52 foam

 
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Posted 05 July 2013 - 01:38 AM

Another update, few weeks ago my bloods were 2100 IgE and 1.0 Eosinophil levels. The best yet. Not only that I totally fixed my low Neutrophil levels, which went from a consistent 1.4-1.8 to 2.9 !:), the highest I've ever recorded and smack into the normal range.

 

I also went to a new specialist to see about getting a more solid diagnosis on the Kimura's disease and ended up booked in for a bone marrow biopsy and core biopsy's of my neck :! and a ton of DNA and gene testing... great :S. Providing that shows up nothing I'll probably be sent to a rare disease specialist they mentioned. In any case I don't really need any of those tests because I'm learning lots and very close to smashing this away without any further doctor help.

 

My recent discoveries and learning are that ecinacea is POWERFUL. I am blaming it 100% for fixing my neutrophil levels.

 

I had to take a few more Metronidizole's because my SIBO came back, but it took more than a month to return and came back less aggressive than before so I plan to attack it again before it comes back next time, plus I want to do a course of Rifaximin, maybe combined. I've realised I need to fight this from multiple fronts, numbing the immune response (here I'm using zyrtec and claratyne which seem the most effective over the counter anti IgE agents), cleansing the system of "wrong for human bacteria species" that become the normal population in your gut after years of eating grain and then re-population of the right bacteria. It seems to me that simply trying to overcrowd one bacteria with another doesn't work, they have changed their environment (your gut and immune system) too much for a normal population to thrive. It's got to be a combination of killing them and healing and re-population. 

 

I'm trying to get hold of some suplatast tosilate which is an anti inflammatory / anti allergy drug which acts on the cytokines which recruit Eosinophils and also works against IgE, certainly not easy to find outside of Japan but I think I'll be able to import some for a test.


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#53 foam

 
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Posted 23 September 2013 - 06:33 PM

So where was I up to?.. Oh yeah. ok so since I last wrote here I've tried a few drugs, seen a few doctors and had some more testing. As for my gut itself it's generally slowing improving, I'm no where near as sensitive to grains and sugars as I was this time last year, now I can eat limited amounts of corn and rice and sugars and my tongue is for the most part most of the time pink, not perfect but pretty good all things considered. I've been to a new specialist about my Kimura's disease and had another ultrasound, I was supposed to do an MRI and full CT scan but in the end we decided it proves nothing and I instead had a bone marrow aspiration (four of them) plus a bone marrow core biopsy. Great fun! (I don't recommend it) but it wasn't painful for me like it is for most people, just very bad feeling in a non painful way. The reason for that is to look for gene errors that may be the underlying cause of my out of control immune system, again this is mostly all caused by long term celiac disease but that's become a side issue now as the damage is done and it's just a matter of dealing with the damage as best as is possible. I've been reading up on Chinese herbs to rebalance the immune system but I'll wait until the labs do all the gene testing because I would say there's no use trying to re balance something that's hard coded broken. It may not be broken but I'll wait and see.


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