Good news, bad news - an update after my MRT test

Zizzle · Post by **Zizzle** » Mon May 09, 2011 12:05 am

Tex,
My daughter developed hives around her mouth a few times when eating foods with yellow#5 (tartrazine?). She seems to have outgrown the allergy but I avoid it. She probably gets some from candy and birthday cakes. Anyway, her allergist said yellow#5 sensitivity runs in families. I later learned my MIL is allergic too!

Kari · Post by **Kari** » Mon May 09, 2011 5:55 pm

http://vitaminlady.com/articles/CocaPulseTest.asp

The above link is to a web site which explains how to use pulse monitoring to ferret out food sensitivities. Apparently, this method has been around for a very long time. My dietitian brought it to my attention.

Love,
Kari

Gloria · Post by **Gloria** » Mon May 09, 2011 8:28 pm

Thanks, Kari. The test is free and if it works, I say go for it. I'm printing it in case I want to try it.

Gloria

sarkin · Post by **sarkin** » Mon May 09, 2011 9:38 pm

A few weeks ago I had a couple of pulse-racing moments - I think I'll try to get a general sense of my HR and see whether specific foods vary it. I just decided to take a few days of being slightly less obsessive - I won't relax my diet restrictions, but thought I might stop trying to interpret my every mouthful and symptom for firm conclusions, at least till I get my Enterolab results.

Thanks for this, Kari - it seems like a very useful addition to the toolbox. Maybe some foods could cause a reaction without elevating pulse rate - but it seems that people have varied reactions to different food triggers in any case.

I'll be interested to know what this reveals for you - and hope you're well!

Love,
Sara

takef586 · Post by **takef586** » Sun Jul 24, 2011 2:09 pm

I thought I should write an update on my condition, as perhaps others could benefit from this experience.

After my MRT test I have eliminated all the offending foods and continued with the restrictive diet, which on top of being GF, SF, CF, YF and Corn and Potato free, was also FODMAP free. The pain has decreased a little, and slowly it has started changing in nature and localization, but has remained a sad constant. The Seroplex 5 mg pills (antidepresant), which have relieved the pain somewhat for a few weeks, ceased to have a major effect thereafter.
I still lost a kilo or two in these months, and the attempts of my dietician to put me on probiotics have worsened the situation substantially - no matter what type of probiotics I took, the reaction was an increase in pain and bloating, and even surfacing of diarhea, which I have normally never had since my problems have begun.

During the last visit to my GI, I said, that n my opinion, my elimination diet and improved stress management have started healing my gut inflammation, but my digestion remained totally screwed up. I felt I have had a high level of disbiosis and some malabsorbtion, but at this point I did not know how to break the vicious cycle of not being able to eat properly in order to improve the gut motility and hope for the pain to go away.
It seems like this has lit up a light bulb in his head, and with a wryly smile he said: take these antibiotics for a week, and if you are going to get better, you might as well never come back to see me...

I have been somewhat astonished by this, but since there was nothing to lose, I started taking the new pills - they were Ciflox (Ciprofloxacin) and Flagyl(Metronidazole) (a joint course of 7 days).
After 3-4 days most of my pain was gone ! i have experienced for the first time in 2 years several hours of being totally pain free ! I have started researching the application scope of these meds, and I understood, that I have just been treated for SIBO.

At this point, I have started looking for comments about SIBO and post treatment evolution, and I found that a relapse can be very likely unless a proper diet is applied. The SCD and GAPS diets seem to be mainly recommended, which in my case would mean for the first time in many months, that I could actually ADD some foods... I have to eliminate only rice and millet. However the FODMAP sensitivity is not addressed by these diets, and I wonder how I should manage that.

It looks like the post gastroenteritis ( which in my case has been diagnosed as LC) IBS-like symptoms, can often be caused by SIBO.

I have found these two relevant links:

http://www.anewibssolution.com/
http://www.siboinfo.com/diet.html

If anyone of you has some experiences to share or comments to make, please do not hesitate.

Ciao

Marek

Post by **tex** » Sun Jul 24, 2011 3:20 pm

Marek,

I wish I knew how to modify the diet to promote the growth of beneficial bacteria, and retard the growth of harmful bacteria, but it seems that everyone has different needs, and no one knows enough about probiotics to be able to recommend a treatment that reliably works for most people.

There are a lot of doctors who claim to be able to successfully treat IBS, (just as there are a lot of doctors who claim to be able to successfully treat all sorts of other diseases, but since IBS does not actually exist, (as a disease), I don't have much faith in such claims. In the second article that you cited, I didn't have to read very far to notice a glaring error:

The only carbohydrate that bacteria do not eat is insoluble fiber.

That's not true, of course - bacteria exist that can ferment insoluble fiber and subsequently digest it - they do it every day in the rumen of cattle and most other ungulates. Of course, humans have a monogastric digestive system, so that option is off limits for us. Anyway, the point is, while a lot of doctors and other "experts" describe diets to treat SIBO, and other forms of disbiosis, there doesn't seem to be any such thing as a treatment that works for everyone. Instead, it seems that the required treatments are very individualized.

I'm not surprised that Ciprofloxacin would stop your MC symptoms, because Cipro seems to work for about 99% of people with MC. It doesn't matter if the problem is D or C, Cipro will stop the problem, for as long as you take it, plus a few additional days. After that, the symptoms always relapse. The problem is - that doesn't prove anything, because it works for everyone, and everyone does not have SIBO.

A few members have even, (following their doctor's advice), used Cipro, (or one of the other fluoroquinolones), as a continuing treatment, and it will continue to relieve the symptoms for as long as it is used. The problem is that the fluoroquinolones cause tendonitis, and sooner or later, anyone who takes one of those antibiotics frequently, is going to suffer an inflamed ligament, or a torn ligament, (often the Achilles tendon). Anyone taking a corticosteroid is at an even greater risk of tendon damage. Athletes, especially, have to be very careful if they take a fluoroquinolone, because of that side effect. I'm not aware of any other antibiotic that works as well as Cipro, for relieving the symptoms of MC. Cipro is as close as we can get to a treatment that works for everyone, but the side effects make it impractical.

I wish I had more useful information to post.

Tex

Zizzle · Post by **Zizzle** » Mon Jul 25, 2011 1:32 am

Hmmm...if Cipro works for everyone, has anyone done an analysis of what Cipro kills, that other antibiotics don't? Maybe we would arrive at a short list of suspects?

Marek, prior to my LC diagnosis, i had remission of a couple months after taking Keflex (cephalexin). The clean-out of the colonoscopy and barium studies improved my symptoms too. The combo of Flagyl and an antibiotic is the "nuclear" option i've considered, but i now understand it won't create lasting remission. I may also end up worse after killing everything off, if more pathogenic strains repopulate in greater numbers. There was a recent thread about this -- the possibility of using oregano oil or caprylic acid (from coconut) as natural antimicrobials on an ongoing, pulsed basis. Then i saw the price of oregano oil...

I suppose Diflucan is a less potent med than Flagyl to use on candida (yeast). But i won't follow it with a sugar/starch-free diet, so there is probably no point for me.

Did your doc ever suggest Rifaximin, the antibiotic approved for IBS?

Zizzle · Post by **Zizzle** » Mon Jul 25, 2011 1:47 am

I'm confused now. Follow-up question: if Cipro has the ability to cure all of us temporarily, what does that say about our food intolerances? Can we eat gluten while on Cipro? Shouldn't our immune system still react to these food antigens and cause D regardless of an antibiotic being on board?

Post by **tex** » Mon Jul 25, 2011 8:29 am

Zizzle wrote:Hmmm...if Cipro works for everyone, has anyone done an analysis of what Cipro kills, that other antibiotics don't?

Cipro is a broad spectrum antibiotic. It kills bacteria by interfering with the enzymes that cause DNA to rewind after being copied. The inability of the DNA strand to rewind, prevents further production of DNA and proteins. So what does that tell us? Cipro appears to be capable of genetic mutation.

Zizzle wrote:I'm confused now. Follow-up question: if Cipro has the ability to cure all of us temporarily, what does that say about our food intolerances? Can we eat gluten while on Cipro? Shouldn't our immune system still react to these food antigens and cause D regardless of an antibiotic being on board?

You have to remember that antibiotics are not simply chemical compounds that kill bacteria. In fact, most of them don't actually kill bacteria, (though some do, of course). Most antibiotics are substances that just happen to disrupt some part of the life cycle of certain types of bacteria, and so they are labeled as "antibiotics". However, their effects are not necessarily limited to bacteria, alone. No one knows what else most antibiotics might be doing to other living tissues.

Please note that as of 2011, the FDA has added two black box warnings for this drug. One warning concerns the risk of spontaneous tendon ruptures, (which has been known for many years), and the other reveals that ciprofloxacin may cause worsening of myasthenia gravis symptoms, including muscle weakness and breathing problems. Myasthenia gravis can be a potentially life-threatening issue, of course. It's a neurological problem, and it has some of the same consequences as Parkinson's disease, but instead of involving neurons in the brain, (at the controlling end of the central nervous system), it involves neurons at the muscle end of the CNS. IOW, ciprofloxacin is not a bactericide - it's a substance with complex organic functions, and most of those functions may still be unknown.

Incidentally, myasthenia gravis was linked with MC, early on, (along with many other AI diseases). Like Parkinson's disease, myasthenia gravis does not become evident, (symptomatic), until late in the game, after extensive neurological damage has already occurred. In it's early stages, it cannot be detected. One can have MG for many years, and never realize it. It might never advance to a serious stage, during one's lifetime. Apparently, though, cipro has the potential to kick it into high gear. So what does that tell us? Cipro appears to be capable of neurological mutation.

Tex

sarkin · Post by **sarkin** » Mon Jul 25, 2011 8:58 am

Wow, Tex, that's very interesting. I took Cipro for a horrible ear infection at some point during my first MC ventures, and it either made my MC/D worse, or coincided with a time when it got worse for some other reason. (Or maybe it was one factor in my mysterious remission... except that didn't come till much later, which makes no sense at all.)

One of my cousins has a different rare, degenerative muscle disorder, which is believed to be autoimmune in nature (inclusion body myositis). My mother had late-life neurological problems (her neuro said not Parkinson's). I have been wondering about a possible gluten-related trigger for those (among other items in the family history), but this adds a whole new wrinkle... including the question of whether Cipro has a different effect when MC has already been triggered, and/or a different effect in those who are genetically gluten sensitive.

Sara

Post by **tex** » Mon Jul 25, 2011 9:30 am

Hmmmmmm. From Wikipedia:

Inclusion body myositis (IBM) is an inflammatory muscle disease, characterized by slowly progressive weakness and wasting of both distal and proximal muscles, most apparent in the muscles of the arms and legs. There are two types - sporadic inclusion body myositis (sIBM) and hereditary inclusion body myopathy (hIBM).[2]

In sporadic inclusion body myositis [MY-oh-sigh-tis] muscle, two processes, one autoimmune and the other degenerative, appear to occur in the muscle cells in parallel. The inflammation aspect is characterized by the cloning of T cells that appear to be driven by specific antigens to invade muscle fibers.

Now where have we heard that before? Oh yeah, MC is an inflammatory disease that is characterized by inappropriate T-cell infiltration. Hmmmmm.

http://www.sciencedaily.com/releases/20 ... 155608.htm

Six patients received immunosuppressive treatment in addition to starting on a gluten-free diet; five improved and one remained unchanged. Among seven patients not on immunosuppressive treatment, four showed clinical improvement of the myopathy with a gluten-free diet. The improvement was also associated with reduction or normalization of serum creatine kinase level. The myopathy progressed in one patient who refused the gluten-free diet. Myopathy may be another manifestation of gluten sensitivity and is likely to have an immune-mediated pathogenesis. A gluten-free diet may be a useful therapeutic intervention.

http://www.ncbi.nlm.nih.gov/pubmed/17143894

As usual the red emphasis is mine, of course.

Love,
Tex

sarkin · Post by **sarkin** » Mon Jul 25, 2011 10:01 am

I've been Googling "just about everything" + gluten (or + celiac) - and was really surprised when this turned up (bet we landed there about the same time, Tex). I have been thinking the neuro/gluten connection was on my mother's side - also the 'true celiac' connection. Maybe it's not so certain. To my knowledge, there's no diabetes in the extended family, nor autoimmune thyroid (well, at least not diagnosed...), but the list of other things is interesting.

My father died from rhabdomyolysis caused by a change of statin drug (I'm guessing the first drug did enough damage to let the more powerful, 'better' drug finish him off). There was myositis noted on the autopsy. There was also dementia noted on the autopsy... which must have been in his chart, as it obviously wasn't observable by the pathologist. When I asked the attending MD, he said, "I know, I talked to him!" - meaning, he knew he wasn't demented when admitted. So, let's just say pretty much nothing in that autopsy report struck me as infallible.

Let's also say it will be a loooong time from now before I take a statin drug; I do believe my risk of muscle damage is greater than average, based on this history. Last I heard, my cousin was staying very much abreast of latest developments. I hope he and his doctor are taking this into account.

I remember him speaking about the hereditary variety, but I don't remember whether that's the variety he has, or whether he was making a different point. Hm.

Love,
Sara