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Mar 24 12 10:18 AM

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Hello, I'm new to the forum.  I was diagnosed a month ago with SIBO, took Xifaxan without improvement, then pushed for O&P test which turned up Blastocystis and Endolimax infections two weeks ago.  Doctor prescribed 3 days of Alinia (500 mg, 2x a day).  From my reading here and elsewhere online, I see that that is likely nowhere near enough, yet she won't budge on her prescription.  I can't seem to find a doctor who will approve a longer/higher dose treatment of Alinia despite that I have seen several posts online (with no details or follow-up) by people who have had success with their doctors treating them with it.  I live in the NYC area and would love to know if anyone knows of a doctor (any type!) who is amenable to prescribing Alinia at higher/longer doses or even the Sydney triple therapy.  I don't feel very comfortable with ordering drugs through Mexico and treating myself, but maybe that's what I'll have to do...?  Please let me know if any of you have doctors you can recommend...I will travel!

Besides antibiotic treatment, I have been following a practically zero-carb diet for months and have only gotten worse, with daily, severe abdominal pain and bizarre bowel movements.  There is no safe food.  I just started eating small amounts of carbs again last night because I was in so much pain and I just don't see the point of following the diet so strictly when I just keep getting worse.  It seems like as soon as I put food in my body, no matter what it is, my intestines revolt.  So discouraging.

What should I be doing in preparation for taking the antibiotics?  Colon cleanse?  Herbs? Lactoferrin/xylitol?  Xylitol is strictly forbidden for SIBO sufferers.  I am vitamin D deficient but when I tried to take 1000 mg of D3 2 weeks ago, I got horrible diarrhea.  When I tried enteric peppermint/oregano, my abdominal pain worsened considerably to the point of me having to stop it.  I feel like everything I try just makes things worse.  I'm at the end of my rope, in agonizing pain nearly every day and desperately need to find a doctor who will work with me to get better.  All the scientific/medical jargon on these sites is overwhelming for me...  I need a protocol that makes sense and that I can implement safely. 

I would appreciate any help or advice you might be able to offer.

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linenup

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#1 [url]

Mar 25 12 12:59 AM

annakat:  Welcome to the forum, I hope that it a help to you.  With blasto infections there are 10 or 11 known subtypes of blasto which means if you have type 1 then it may require a different protocol than say subtype 6.   Testing at this point is not able to pinpoint subtyping but Metametrix is working on this last time I talked with them.  

Typically blasto does not come out with just a single drug therapy.  If you have not been to badbugs.org you may want to take a look at the different drug combinations.  They are currently promoting the triple drug cocktail of Nita, Septra and Diloxanide Furoate but there are other reports of success using other drug combinations.  There is a member named europa that is a blasto sufferer, I am not sure if they have been back on this forum but you may want to send a PM to europa and collaborate -   Also Ken Boorom has a resource that may be helpful, he has a newsletter that you can get and a forum I believe.  

Check under the success stories category and read someone's recent eradication and their advice on using psyllium during the drug therapy.   

Regarding gastro distress, as you know these parasites are quite disruptive to the gastro environment and it sounds like you have a lot of inflammation.  I have a list of some herbs and supplements you can look at under the lacto/xylitol protocol listed under the protocol category that could be helpful.   Colostrum has been reported as being beneficial for many, it offers many healing properties to the gastro environment.   Glutamine is another that comes to mind.  

   As far as your doctor is concerned, many will not prescribe and sadly many are forced to obtain drugs by other means.  Let us know what other questions you have.

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#2 [url]

Mar 25 12 2:57 AM

hi Annakat,

Welcome!  You'll find that lineup is one of the secret weapons on this forum, and this forum is one of the only places you can find concrete and helpful suggestions and advice, so it's great you're here.  Along with about a million othe things I've already tried, I am attempting to get meds and treatment from Dr Tom Borody, at the Centre for Digestive Diseases in Sydney Australia.   The Centre has a website, and he says he will work with Docs in other countries and send meds to people if you send your test results to him  I did that, and his assistant replied and said she put my case on his desk to see if he can help.  Right now I'm waiting to hear back.  What state are you in?

The good news is, that even though I am not cured of this, by using the suggestions and natural remedies like colostrum suggested on this forum, my symptoms are not half as disruptive to my life or an painful as they were previously.  Don't give up!
  Lynda

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#3 [url]

Mar 26 12 8:10 PM

Thanks so much for your replies, lineup and Lynda.  The last few days have been really bad...severe abdominal pain, bloating, distention, diarrhea (and constipated bits at the same time).  I am too sick to wait out the process of finding a doctor to help and obtaining the triple therapy.  In the meantime, I've got to do something so am probably going to take the Alinia for the three days my doctor prescribed and hope for some relief.  It's either that or go to the emergency room because the pain is unbearable :(

If anyone out there knows of a doctor in the NYC area or anywhere remotely close that can help me, I would be so grateful. 

Anna

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linenup

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#4 [url]

Mar 27 12 1:25 AM

 Dr. Kevin Cahill is supposed to be an A+ doctor for protozoa, I hear he is not the most cordial doctor but he is good (heard from others)  -  Dr. Galland is another NYC doctor is is well renowned for his gastro knowledge but he is expensive.  I do not think these guys would be helpful if you had pptu but a confirmed parasite helps a lot.    Please help us as well by posting your outcomes.   

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#5 [url]

Mar 27 12 8:18 AM

Thanks, linenup.  I definitely will post follow-ups as things progress.  I actually had an appointment with Dr. Cahill scheduled for tomorrow, but cancelled it because I read so many negative reviews of him (one in particular stating that he dismissed a blastocystis infection outright).  He seems to get both rave and negative reviews, but seeing that he considered blastocystis non-pathogenic and charges about $500 for consultation was what made me cancel the appointment.  Have you heard reports of him successfully treating blastocystis?

I had bloody diarrhea this morning, which clinched my decision to just take the Alinia for three days and see what happens.  I don't have my hopes up, but feeling as awful as I have been, I need to do something.  At this point, given the severity of my symptoms, I wonder if there isn't some other infection present as well, or even some form of IBD.  I just don't know.  I've never had the bleeding before.

I may go see Dr. Galland, depending on how I feel after taking this drug for a few days.  Onward and upward...  Thank you again for your input.

Anna

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#6 [url]

Jun 22 12 7:37 AM

Hello,

I have SIBO also but I am mostly constipated. I had blastocystis but I got rid of it with 7 days of Flagyl but I still have Endolimax plus a PPTU. For your SIBO: Xifaxan alone alone may not be the right treatment. I was treated at Cedars Sinai in LA and they gave me Xifaxan with Neomycin then Erythomycin. This helped me some but I have recurring symptoms. I am wondering if my problems are more SIBO or parasite and if the parasites might cause the SIBO. Please post if you get helpful treatment.


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#8 [url]

Jun 30 12 1:42 AM

Hello iloveisabelle , Sorry for the late reply. I had Blast Hom and it was supposedly eradicated with Flagyl two years ago. I took 7 days of Flagyl  and Blasto has not been found in my stool since. But recently I had a Metamatrix test that showed Endolimax and a PPTU. I am suspicious the PPTU could be the Blasto.

My Blasto symptoms are hard to separate from my current symptoms as I really have had no change in my problems before or after the Blast was removed. But my symptoms were and still are, bloating, abdominal pain, reflux, gastritis, constipation, hiatal hernia, mucus in stools, weakness, brain fog, nutritional imbalances. 

I hope this answers your questions. I also hope to have another stool test done to confirm my PPTU. Unfortunately I live far from any proper medical facilities.

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#9 [url]

Jul 3 12 6:11 AM

sicksibo, I can't believe how similar our symptoms/diagnoses are!  I have literally every single symptom you have, apart from vomiting, although I do experience quite a lot of nausea, particularly before bowel movements.  I also have a bizarre manifestation of constipation in that I continue to have bowel movements every day (sometimes multiple, incomplete, diarrhea-like ones) and yet remain constipated.  The only way I know this is because I ended up in the emergency room after having diarrhea 7 times in one day and was in horrific pain.  When I did the x-ray in the hospital, they told me I needed to take laxatives because I was backed up.  So bizarre.  Because of these mixed-message symptoms, I never know what I need to do to feel better, i.e. whether to take laxatives, etc. 

The interesting thing in the last few months (and the reason I haven't posted here in so long) is that I did a colonoscopy/endoscopy in mid-April (only problems discovered were gastritis and reflux/hernia, which I already knew about) and subsequently became MUCH better for two months.  It seems as if the "prep" process cleaned out some of the SIBO/parasites.  I had normal bowel movements, minimal to no pain, no bloating, and just felt generally well.  I continued to have some nausea, though, which may have been because of my reflux and gastritis.  It was amazing just to be feeling better without daily excruciating pain.  Two weeks ago, however, my symptoms started back up when I traveled and became constipated again.  So now, I'm back taking miralax every day and going through the repeat partial bowel movements along with pain, discomfort, bloating, nausea, etc.  Very discouraging. 

I did another stool test this morning and will wait to see what results say.  I've already taken xifaxan for sibo and 3 days of Alinia for blasto to no avail (may look into the sibo protocol you took with success since we seem to have the same symptom profile).  Like you, I don't know what the true cause of my symptoms is...blasto, sibo, ibs, chronic constipation (but caused by what?), thyroid/hormonal imbalance, etc.  I've been seeing a naturopathic doctor who believes I have a non-descript autoimmune problem and has me taking reishi mushroom, rehmannia and marshmallow extracts.  I'm also seeing a homeopathist and taking drops she gives me, along with several herbal supplements (evening primrose oil, glutamine, DGL, multivitamins, raspberry leaf).  Who knows if any of this will ultimately help...?

I just wanted to say that you're not alone in how you're feeling and what your tests are telling you.  I've never done the Metametrix test since blasto and endolimax turned up on a standard stool test from my GI doc.  We'll see what yesterday's test turns up, if anything.  All best to you... 

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#10 [url]

Jul 3 12 9:54 AM

Hello AnnaKat,

Thanks for writing back. You have the most similar symptoms to mine of anyone I 've contacted yet. I have never had the strange diarrhea you suffer but I get a bout every so often and I feel much better afterwards. Please keep in touch as we can exchange info on what has helped each of us.

Just wondering about a few things:

Did you do a prolonged treatment with doxycycline or another broad spectrum antibiotic just before your illness began? I am sure this caused many of my troubles perhaps causing SIBO and allowing the parasites to get a firm grip on my system.

Have you ever tried a short fast of maybe 24 or 48 hours no food only water? This really works for me when I am constipated. Somehow I am able to have good BMs in the days after the fast.

Do you sometimes have better days even after you have eaten bad stuff - sugar, sweets, grains, etc? And feel very ill after you have eaten a strict good diet? And does this make it hard for you to understand an obvious correlation between what you eat and how you feel?

Do you have trouble tolerating supplements because of your reflux and gastritis?

Do you have borderline hypothyroidism or hyperthyroidism? Hyper or hypochlorhydria?

When constipated do you pass small hard lighter colored stools with mucus?

Do you have a yeast overgrowth?

When you feel your worst is your lower abdomen swollen like a pregnant women and when you feel best is your stomach nice and flat?

Do you have palpitations or feel and hear gas moving near your ileocecal valve or up your LES - lower esophageal sphincter, especially when you swallow liquids?


A few things that seem to help me:

Flagyl may have eradicated my blastocystis. I took it in 2010 and it has not shown up in any followup stool tests but I am worried it might be the PPTU I had on my Metamatrix. So Flagyl might be worth a try for you.

Short water fasts, yoga - general and for abs, insane amounts of exercise when I am able, Miralax, sunflower seeds, coconut, herbal teas - anise, camomile, ginger

The Cedars Sinai  Protocol which is xifaxan with neocycin followed by eurythromycin. DO NOT take xifaxan by itself it is not really effective. I felt good for months after this protocol but my symptoms came back. I am also skeptical of antibiotics derived from streptomyces (like neocycin and eurythromycin) as my streptomyces bacteria count is now way too high and most others are very low. Antibiotics made from certain bacteria may only eliminate specific bacteria and make further imbalances. I won't try any antibiotics for SIBO again but perhaps for endolimax.

My safest diet includes only non-starchy veggies, yogurt, and coconut - juice, milk, and oil (nothing else - no sugars, no grains, no fruit but banana & lemon/lime juice,  little or no meat, only a little fish, no beans, no alcohol) Unfortunately even this diet will bind me up after a few weeks or so and I have to make changes.

Anyway just want to see how much of this is familiar to you.

(Sorry for other members if this message is a bit too involved and specific to AnnaKat and myself.)





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#11 [url]

Jul 3 12 10:34 AM

annakat,

Did you or are you taking a PPI - Prilosec, Nexium etc? If so you might want to get off it. Quitting Nexium helped me greatly. I'll let you know why and how I did it if you'd like. (I could write another long crazy post about PPIs)

Sick

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#12 [url]

Jul 7 12 8:16 AM

sicksibo,

I will try to address all your questions. 

I don't know what prompted my SIBO/parasite infections.  I had not taken antibiotics for many years prior (at least 10 years).  I had been on Protonix for reflux for about 4 years.  I went off of it about a year or two before getting sick again.  It had helped me tremendously but I weaned myself off it because I was concerned about its health risks.  I don't know if being on it/going off it impacted my SIBO/parasite problem.  I felt great while I was on it.

I have tried fasting and every restricted diet (elimination diet, no carb, no sugar, etc.) for SIBO.  Nothing helped.  I thought I was gluten intolerant because when I did the elimination diet and added back a high fiber rye bread, I was sick within an hour, twice.  However, I later realized that what was making me sick was the high fiber aspect because when I eat "white" starchy gluten products I'm fine.  Other than high fiber gluten products and sorbitol-containing fruits (apples, pears, etc.), I notice no obvious correlation between my symptoms and what I've eaten.

In terms of supplements and tolerating them, I have definitely had bad reactions to certain ones, but they seem to be the ones that worsen my reflux.  I think I have HYPERchlorhydria because anything with HCL makes me feel awful.  I also had bad reflux from enteric coated peppermint/oregano.  At this point, I am taking tons of supplements from my homoepathist and naturopath.  I am not noticing any ill effects from them specifically, nor have I felt a benefit necessarily.  Just generally been worse in the last 3 weeks than I was for the 2 1/2 months post-colonoscopy.

My thyroid tests have been normal except I had one test that showed high antithyroglobulin antibodies two years ago right before I got sick with SIBO/parasites.  When I retested a few months later, they were normal.  I'm not sure what to make of this, as I've read contradictory information.

In terms of symptoms, my digestive system is just very erratic and I experience a lot of pain.  In the last three weeks, I feel as if I'm constipated constantly, with bloating, pain, nausea and loss of appetite, and yet I also have bowel movements every day (likely because I take miralax nearly every day) multiple times in the morning and sometimes later on also.  Even though I'm going several times, I never feel truly empty and still have discomfort and bloating and sometimes pain.  When I am truly constipated, I do pass the small hard stools with mucous you asked about, although they can be dark or light and in weird shapes, as well.  No rhyme or reason.  I don't know if I have a yeast overgrowth.  I tested for it several times over the years (before SIBO...when "IBS" was the supposed culprit) and it always came back negative.  Not sure about now.

I do feel best when my stomach is flat, which is a rarity lately.  I do get palpitations once in a while when my reflux is really bad, and I do have trouble drinking a lot of liquids.  My intestines and stomach make a lot of gurgling (maybe gas?) sounds after I eat. 

I work out whenever I can, i.e. when I feel well enough.  Before I got sick, I was working out hard, constantly.  It may have been that I wore my immune system down by exercising too much...?  I don't know.

I hope this answers your questions.  I'm still trying to figure it out.  The last few weeks have been awful and seem to just be getting worse.  For two months after the colonoscopy, I felt much better and could eat anything.  Now, I'm in daily pain and discomfort with weird constipation/diarrhea combination every day, all day.  No idea what more to do beyond what I'm already doing.  I started VSL#3 this morning hoping maybe that will help.  I'd tried it for a month last year and it seemed to help, but then I read that blasto loves probiotics.  Who knows...? 


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#13 [url]

Jul 7 12 9:38 PM

Annakat,

Sorry you are feeling so bad I hope you get relief soon. Please let me know if the VSL3 helps you. It didn't work for me. I asked all those questions to try to see how similar your condition is to mine. It seems pretty close with the obvious difference in immediate cause and reaction to diet. I get bloated even with white flour and anything with sugar or high carbs. Maybe it is the yeast which you don't have. All my symptoms appeared rapidly after a month log bout of doxycyline. I hope we can make a pact to keep in touch as that could double our chances for finding some answers and getting better. Thanks for addressing my questions in such detail.

Our most troubling similarly is the PPI question. I still struggle with the question of whether I have high or low stomach acid. Symptoms are supposed to be nearly identical and doctors often prescribe PPIs in fear of long term acid damage and don't seem to have a strategy for dealing with low stomach acid. I was scheduled for a Heidelberg test to answer the question definitively but to my dismay my new GI cancelled the test after an endoscopy because she saw no acid damage at all. It was then I decided to get off PPIs which I had been on for many months. I felt awful at first but now better than when I was on them. Often I get a burning pressure under my rib where my LES might be, I think it is my sliding hiatal hernia going up or down and putting pressure on my diaphragm. Most of my reflux seems like phlegm or saliva spit not acidic like vomit. I tend to think I have must have hypochlorhydria. If that has been the case PPIs might have been a contributing factor to my SIBO and constipation and perhaps helped allowed the parasites in.

Did you have a Heidelberg test or visible signs of acid damage to confirm your hyperchlorhydria?
Did you develop SIBO while on PPIs or before?
Did you have your gut or stool bacteria analyzed like Metamatrix? I have very low bacteroides, very high streptomyces, and low levels of most other bacteria which I think might be a constipation creating combo. If you find out which of your bacteria is low you can target them specifically with probiotics rather than a blanket dose of VSL which might up some bacteria which is already high.

I go through months of helplessness like you seem to be in right now where I am in bed or on the couch all day and can't muster an effort to fight back. But I also have lucid weeks which I am in now. I am insanely delighted that I can do things again and spend hours a day exercising and devising new ideas to get well.  I am aggressively following a new plan to first get rid of the yeast. I am reducing all foods and supplements from my diet like a reverse elimination diet. I am only on vegetable soup now and in 3 days I will do 3 days of broth and water only, then three days of water only, then three days of broth again and add items one at a time testing them for 3 days until I rebuild my diet. If all goes well in a few weeks I am going to do Lineup's Lactoferen/Xylitol protocol with caprylic and monolauric acid to try to get rid of the parasites. If I make it that far I will next try to address the SIBO with HCL, bile salts, and pancreatic enzymes and rotating in different supplements like garlic, peppermint oil, etc.  Finally I will try to up my bacteroides, and other bacteria with echinacea and homemade yogurt. If this doesn't work I think I might have to see someone like Dr. Gallard or just kill myself.

Hope things look up for you. Sick


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#14 [url]

Jul 13 12 12:04 PM

Hi sicksibo,


Well, I am still unsure about things as far as reflux/acidity is concerned.  I first went on Protonix in 2005.  I had been having terrifying larygospasm episodes where I couldn't breathe for about 20 seconds at all and when I visited an ENT and he looked down my esophagus, he said my arytenoids were red and swollen, likely due to reflux.  I didn't want to take medication, so I tried to stick it out.  The laryngospasm severity eventually got a little better, but I continued having loss of appetite, vague nausea, tired, raspy voice, etc.  I never had heartburn.  Then, I went to a naturopath who tested me using PH strips in my mouth and told me I had "low stomach acid."  He put me on HCL capsules and I got MUCH worse.  Pills would get stuck in my throat and cause horrible pain and I felt sick all the time, with intense abdominal pain similar to what I've been experiencing of late.  I finally went to a GI doctor and had an endoscopy.  She told me I had a small hiatal hernia and esophagitis due to reflux.  I then went on Protonix for several years and everything seemed to improve, especially the reflux, but also my constipation at the time.  I felt worlds better, but eventually weaned myself off of it because of the bad things I was hearing about it leading to osteoporosis.  


Two years after going off Protonix, my bowel symptoms became way worse (SIBO, parasite diagnoses followed a year and a half into it, this past winter).  I had an endoscopy/colonoscopy in April and it showed gastritis and hiatal hernia.  While my main concern has been the bowel symptoms, I have been increasingly nauseous and having no appetite.  I was feeling so bad earlier this week that I actually vomited, which I haven't done in about 8 years (severely phobic).  Since then, I've been near-continuously nauseous (the vomiting didn't relieve the nausea...it seemed to worsen it), burping constantly, etc, in addition to feeling anxious and panicky about it happening again.  Surely the anxiety doesn't help matters...


I have never had a Heidelberg test...have considered doing it, although all signs seem to point to HIGH stomach acid levels since HCL makes me worse, as does the apple cider vinegar/baking soda combo.  I don't know if my gastritis is from high acid or SIBO bacteria, etc.  I don't have H. Pylori, luckily.  I also don't know if I developed SIBO after or before protonix.  I was only tested after my symptoms worsened recently, but I could have had it all along and not known (I always had IBS symptoms, just not as severe as they've been lately). 



I have not had my bacteria analyzed by Metametrix.  I don't know much about it, to be honest.  I'm very overwhelmed by the sickness and have felt so depressed and hopeless this week, especially after the vomiting.  After throwing up, I had to go to the bathroom many times and had a lot of lower abdominal pain (I had also been taking miralax daily for weeks).  It's possible the vomiting was the result of my body trying to get itself to move things through.  Since then, I've been less constipated and haven't had as much pain as I did for the weeks prior.  I have, however, been nauseous, exhausted, burping constantly, and anxious.  I wonder if high stomach acid can contribute to SIBO and parasite infections the same way low acid can.  I never read about that, but maybe imbalances of any kind can contribute...?



I really appreciate your support and send mine your way, as well.  The hardest part of this whole thing is how isolating it is and how sad it feels to not be able to partake in normal activities with friends and family.  I'm either sick or anticipating the sickness' return in those brief moments of wellness.  I was actually feeling better on Monday before I suddenly felt nauseous and had to throw up.  I had felt some glimmer of hope before things suddenly worsened.  So discouraging.  Anyway, I am glad you've been in a better place lately and wish for that to continue for you.  Wishing health and peace for everyone on this board...

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#15 [url]

Jul 15 12 11:59 AM

Hello AnnaKat,

I am so sorry you are struggling so much. I hope you can get some relief soon and that your symptoms subside. Remember that no matter how bad you feel it always cycles back to feeling much better. It will again; hang in there. Believe me I know exactly how you feel and it is so familiar. I can deal more easily with the SIBO than I could with the reflux. Worse for me is the hiatal hernia which has pushed out my left rib almost an inch and causes constant pain. I had the same laryngospasms a few years ago and sore throat. I had a pack of PH strips I used to test my saliva for months. I think the spasms along with an uncontrollable urge to incessantly swallow pumped so much air into my stomach that the pressure created my hiatal hernia. I also had pain in my teeth.  The whole thing was kicked-off by my used of doxycyline. The powder in the capsules can cause GERD if it gets in your throat as well as gastritis. If I had known at the time I would have not have taken the meds at night and would have used an antacid eveytime I took one or really I would have just never taken any antibiotic ever.  Fortunately my reflux symptoms have gotten much better over the last year. The strange thing for me is that there seems to be correlation between the reflux and SIBO. I feel better when I am not bloated and the reflux acts up mostly when I get super bloated. It is also possible that the parasites have paralyzed our intestines so they are unable to allow normal function and sweep out the bacteria. Parasites secrete chemicals that interfere with motility to use us to there advantage. This can cause a backup that causes our stomach acid to go nuts. 

Metamatrix is a newer kind of test favored by natropaths. It does a chemical analysis of your urine and stool including a DNA sweep for parasites, yeast and bacteria. It gives bacteria counts which are very useful; you can find out which bacteria is low and which is high compared to human averages. This can give clues as to what is going on as certain bacteria thrive or retreat depending on your condition. It also will help to develop a strategy to target specific bacteria with treatment and diet to bring down those running rampant and bring up those that are being pushed out.  It will tell you what problems you are having with digestion through chemical analysis. It sounds like you might have the problem I have. The SIBO messed with my absorption of tyrosine which is also making me more depressed and interfering with my thyroid.

Like you this illness has really alienated me from everyone except my poor wife who has to deal with my hopelessness. I don't do things with anyone anymore and remember simple pleasures as something I used to enjoy but don't have the interest to feel anymore. I quit my job a year ago to try to heal myself as I was unable to handle even the smallest bit of stress. I know stress also triggers problems especially the reflux. Before I got sick I was pretty stalwart and capable of dealing with many things simultaneously; now I struggle with simple tasks which end in  frustration. Luckily I go into bouts of feeling much better which usually only last a few week. Then I spend months in bed and on the couch.

I have been better for weeks and am now in the middle of a fast. Oddly the fasting has caused the return of many of my earlier reflux symptoms though not as bad. Perhaps it is high acid after all??? After a few days I will do a version of the elemental diet. I am not sure if you heard of the Vivonex treatment for SIBO but I am gonna try that now but I am making my own compound because Vivonex has food starch, maltodextrin, soybean oil, and preservatives. I will be swallowing pills for two weeks, no food. After that I am going to rebuild my diet item by item. If you are interested, I made a database of all the foods considered safe to eat by all these diets: SCD, FODMAP, SIBO, GAPS, Candida, low glycemic, and low fructose. I condensed a list of the only foods they all agree on. Those are the only things I will eat for many months.  I can send you a copy as an EXCEL file. I posted it on sibonation a Yahoo group which you might want to join.  There are other fellow sufferers there with similar troubles. Link is here. health.groups.yahoo.com/group/sibonation

I am so glad you are replying to me and hope we can stay in touch. I think you and I have
symptoms so similar that if one of finds a treatment it will help the other and double our chances to get better. Please keep in touch and get well.

Sick


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#16 [url]

Jul 22 12 5:00 PM

Wow. I identify so much with what you guys (Annakat and sicksibo) have written above...

I graduated with a concentration in cell biology/immunology from a top-tier university, and am holding off on my plans to enter medical school, because I just don't have the energy at the moment. I have a chronic, low-grade tiredness that doesn't interfere with my life too much at the moment -- but only because I don't push myself very hard or far, and have very little stress. Med school would kill me.

I've had this thing (recently "identified" as PPTU) for about 3 years now. It certainly put a dampener on my high-flying academic career, that's for sure! 

If I ever do resolve this problem (some part of me still hopes that one day soon, I can find a way to make it vanish and never come back), and get my medical degree...I will be different from all of the doctors I've encountered who fobbed me off with a "diagnosis" of IBS. 

I will listen to my patients. 

I will maintain an open mind. 

I will be the Fox Mulder of the medical world - the truth is out there, and no explanation will be ruled out. 

The medical world needs someone with my unique mixture of talents and experience. I just hope I get well enough to make it happen. 

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#19 [url]

Aug 14 12 6:56 PM

But my symptoms were and still are, bloating, abdominal pain, reflux, gastritis, constipation, hiatal hernia, mucus in stools, weakness, brain fog, nutritional imbalances. 


-sicksibo


sicksibo, I can't believe how similar our symptoms/diagnoses are!  I have literally every single symptom you have, apart from vomiting, although I do experience quite a lot of nausea, particularly before bowel movements.  I also have a bizarre manifestation of constipation in that I continue to have bowel movements every day (sometimes multiple, incomplete, diarrhea-like ones) and yet remain constipated...The interesting thing in the last few months (and the reason I haven't posted here in so long) is that I did a colonoscopy/endoscopy in mid-April (only problems discovered were gastritis and reflux/hernia, which I already knew about) and subsequently became MUCH better for two months.  It seems as if the "prep" process cleaned out some of the SIBO/parasites.  I had normal bowel movements, minimal to no pain, no bloating, and just felt generally well. 



-annakat

 
I'm so grateful to not feel alone. My symptoms are literally the same as both of you (although nutritional imbalances are not confirmed, just suspected). I've been through abdominal and transvaginal ultrasound, CAT scan, colonoscopy, endoscopy, and finally a Hydrogen Breath test not to mention blood test after blood test. Bloodwork always varies,  but generally comes  back close to normal. My hydrogen breath test came back almost off the charts (methane, hydrogen levels were not too bad). I was relieved to finally have the SIBO diagnosis, but I still have no idea what to do now. The first GI doctor that finally believed me is the one I'm still with, but he has no idea what to do when antibiotics fail.

I've been on an absurd number of antibiotics regiments in the past few months (10 months now) and I usually feel great halfway through, but then everything comes back within hours of stopping the antibiotics. I've had a few brief weeks of feeling great after a Flagyl/Augmentin combo, but I think my body has gotten used to it so nothing since. The bloating is the worst--sometimes as much as 7" (I measured bc I thought I was going crazy). I have the abdominal pain and cramping. My endoscopy came back with gastritis, esophagitis, and hiatal hernia. I've been on reflux meds now since my endoscopy (about 3 months), but started them after the SIBO. The weakness and brain fog are terrible when they hit. I've literally walked out the door to try to go to the doctor when I'm feeling like that with no purse and my hubby had to come rescue me because I couldn't get home. Sick and Caspase, I can relate to the having to quit your job or put future plans on hold. Aside from the bloating, the brain fog and weakness are terrible. Sometimes I'll feel so weak that my hubby will have to literally feed me because I feel like I can't even lift my arm. The brain fog is destroying my professional life. I was on track to graduate with my M.S. before I got sick, but I was supposed to finish my thesis this past year, and every time, I relapse, I lose weeks of work until I can go back. If I can't get my symptoms under control in time to finish it before December, my school is threatening to make it so I can never graduate unless I pay another 85K for my coursework. My student loans are so high, I could never go back and finish my degree. We're drowning in medical bills and had to push up our wedding just so I could get on my hubby's insurance. But until I'm able to get back to work, we can barely make ends meet. I have no idea where to turn. If anyone has advice or suggestions on a good NYC doctor or words of advice, it would be very much welcome. For now, it just feels nice to know I'm not completely alone.

Ara


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#20 [url]

Aug 14 12 7:21 PM

Ara, sorry to hear of your challenges.  If you haven't tried diet management and antibacterial herbs it might be something to help cope.  I don't have sibo (protozoa infection) but a strict diet and several herbs have enabled me to function most of the time.  I'm miserable when I go off this regimen.  Hope you get some answers here.

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