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#81 [url]

May 31 12 5:34 PM

I have spent the last 2 years and thousands of dollars trying to combat this bug.  It started as fatigue and depression without sadness, lack of energy.  I was diagnosed with a b12 deficiency with no known cause, next came the iron defeiciency, the vitamin a deficiency and I continued to feel worse and worse. Because a b12 deficiency takes many years to develop I think I got the bug on a cruise.  Other members of the family also on the cruise are now fighting deficiencies.  I was put on a ppi because the vitamin c with the iron supplements, burned the esophagus, this triggered diahrrea.  Trying to stop the PPI caused severe acid and extreme gallbladder pain which was stopped with h2 blockers. Took 2 months to get off the h2 blockers. GI's when asked about this are completely unable to explain it, ultrasound and emptying normal. Everytime we tried to treat one thing other things got worse, diagnosis of bacterial overgrowth which continued to get worse when treatment ended. Vitamin d was also deficient.  Then severe joint pain, and temporary paralysis of single muscle movements which turned out to be a b2, b1 and b6 deficiency.  Stool off of antibiotics would go from normal to fatty to undigested. Then rehmatoid arthritis kicked in a totally different type of pain.  Every test you can imagine, multiple stool samples, multiple Gi's each worse than the last.  Finally one did a video capsule and found the entire small intestine was filled with fluid, xifaxan and misoprostol for 4 months resolved the bacteria and removed the fluid but triggered a huge yeast infection which the GI refused to treat despite that test actually coming out positive in stool sample, naturopath prescribed multiple different herbs but issues with many of them.  Berberine helped my vitamin levels but shut down the small intestine.  Taking 6 Times the RDA of vitamin a and iron and still borderline deficient.  Then in january my 17 year old son was failing his senior year and I had to fight with the pediatrician to run a b12 he had a deficiency as well as being deficient in vitamin's a and d, with the similar changes to the stool I had observed in my own stool.  His teeth had decalcified the previous year which I now know was the d deficiency. I kept reading the protozoa parasites caused these vitamin deficiencies.  Finally a GI at a teaching hospital that specializes in nutrition told me to start researching herbal remedies because traditional medicine has nothing to offer me, she also suggested using some of the other laboratories since the regular lab would not get a positive sample but alas I have lost my job.  My GP is a saint and will support anything I come up with but now I am fighting for the future of my child with myself as the guinea pig.  I am currently taking the following supplements just to feel okay and function
prenatal vitamin
10,000 d
1200 a
200 b2
600 e
50 b6
100 b1
glutamine,
pancreatic enzymes,
probiotics,
prebiotics
tumeric
fish oil
rotating doses of flagyll, cipro and nystatin monthly
250 magnesium
30 zinc
2 copper

I can track the parasites by my lab results quite easily. Just testing for carotene, vitamin D, vitamin e and the b12 if I stop the shots. By adding all of the supplements particularly the b's and a, d and now e as well as b12 has been critical to my functioning. I have significant allergies to many antibiotics which makes it worse and now am on medications to take out the immune system due to the rheumatoid arthritis which showed as extremely high anticcp antibodies.

Now my liver enzymes are rising. I am amazed I have not seen more posts regarding vitamin deficiencies and their correlation to the parasites and the fatigue. This has been an odyssey where I cannot beleive the total stupidity of gastroenterologists, total inability to look outside the box or research anything. Absolutely no understanding of absorption or nutrition.  I went to a specialist at university of pennsylvania, he said that my body just didn't need iron, that I was absorbing just fine, that I needed to be taking less, and wanted to put me on antidepressants for the pain. I asked him if they would help since I wasn't in pain. He said no. His collegue in the the same office who specialized in nutrition told me that I was absolutely malabsorbing. That it was likely a parasite and that traditional medicine could not help me. She did recommend the pro/prebiotics and pancreatic enzymes. If I find something that works I will post it. The health insurance only pays for the morons and prescription drugs.  It takes $300 a month just to function. I will say that berberine was significantly helpful and responsible for the 3 weeks that I felt great this year.  Best of luck in the fight.

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linenup

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#82 [url]

May 31 12 10:37 PM





Welcome to the forum, do you have a firm diagnosis concerning the species?


Now my liver enzymes are rising. I am amazed I have not seen more posts regarding vitamin deficiencies and their correlation to the parasites and the fatigue. 


Please see 'supporting the body' and read about the methylation posts.   These parasites produce high amounts of immune action which results in high oxidation states.   High oxidation damages cell membranes and depletes vital glutathione stores.   When you use up glutathione stores, the liver is unable to detoxify correctly, it is vital to keep the liver open.   Sadly we all have become supplement junkies to stay at some functionable level.  


Good to hear about the berberine - for others information this is a chemical structure found in a few herbs such as goldenseal, coptis chinesis, oregon grape root etc.   There have been reports that coptis chinesis has shown some effectiveness in combating blastocystis.  http://curezone.com/forums/am.asp?i=1641855




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#83 [url]

Jun 1 12 6:40 AM


dizziebeth (beth?),

sorry to hear what you are going through and to have to worry about your son on top of it. I cant imagine. 

I have noticed vitamin deficiencies with whatever I am fighting and they are vitamin d, iron, potassium magnesium, calcium, copper and recently discovered vitamin A. 

Im curious too if you have had any diagnosis of bacteria or parasites. All my tests have been negative.

I developed achy joints in my hands and feet  (rehmatoid arthritis?) which lasted a few years until I accidently cured it by taking bile capsules in between meals. Maybe this would help you? My aches got worse for a few days on this protocol but after a few days or so my aches were forever gone even after stopping the bile. I had a mild flare up a year later but the bile worked again.


Have you been tested for heavy metals? I have high lead which i believe may be affecting some of my minerals. Of course you have read that metals can allow infections to thrive.



I have spent a lot of time researching decalcification of teeth and am about to try the Dr. weston price (DDS) method which involves two specially made supplements-high vitamin butter oil and fermented cod liver oil (most if not all cod liver oil made today is stripped of its natural vitamin A and D).  This particular cod liver has not been treated to be decolorized and deodorized which is what take the vitamins out in that process.


I have read many positive reviews following the program and just over the past week doing my own version has made a difference in my vitamin A symptoms which before were not affected by supplements.  All the vitamins and minerals necessary for remineralization work in concert. And especially needed is a natural animal source of Vitamin K which Dr. Price felt was the neccessary factor to make all the necessary nutrients active. 


It is my thinking that if all these nutrients can remineralize teeth then these factors are also at work repairing other body systems and will probably help with infections of all kinds.

 Most people on the program have reported that they no longer get the yearly cold or flu. Some have noted the no longer have tartar growth on their teeth. Most people including my self have noticed skin infections are reduced dramatically. After only one week I have amazing super fast wound healing and my skin texture is totally different. If its doing this to my outside there must be something going on on the inside too. 


Anyway I just started the Price method so that is all I can report so far.  I havent started the official supplements yet only following the poor man version which involves taking high amounts of grass fed butter along with Carlsons cod liver oil and a diet high in veggies, dark greens, and grass fed beef while restricting fruits, and refined carbs. 


Please look into this method for your sons teeth. 

Hope you are better soon.

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#84 [url]

Jun 1 12 8:07 AM



dizziebeth, 

I posted this link on info for treating arthritis (which this society believes to be an infection)

http://pptu.lefora.com/2012/06/01/possible-clue-do-you-have-achy-joints-or-arthritis/#post0

http://www.arthritistrust.org/history.htm  

( From the 1970's onward Professor Roger Wyburn-Mason experimented with different chemicals that would cure Rheumatoid Arthritis and related collagen tissue diseases. He developed the medical use of copper solutions, bile, and other drugs..)  

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#85 [url]

Jun 1 12 9:00 AM

Thank you so much for the information.  We ended up filling the areas of the teeth that decalcified because they were at the gum line.  The vitamin d has allowed the absorption of calcium and stopped the decalcification.  I did try vitamin K and found it to be helpful in improving my energy and function.  I have been considering bile for myself, what brand do you recommend and where do you get it?  I am currently on orencia which is helping and recently a low dose prednisone is helping more.  I had to stop methotrexate due to liver deterioration.  The problem is that the high CCP antibodies are indicative of a fast progressing course and the first joint scan showed damage everywhere despite the fact that function has not yet been impacted.  I was diagnosed with bacterial overgrowth initially and the video swallow showed huge colonies of bacteria however my last hydrogen test after treatment with misoprostol and xifaxan showed no more bacteria.  The symptoms persisted just not as severe.  I read that protozoa can cause the bacterial overgrowth.  I think it went into hyperdrive when I was put on nexium.  Also the misoprostol was to increase small intestine motility which can be impaired by leaky gut which I also had but seems to have resolved.  The other motility drugs have severe side effects, misoprostol is a prostoglandin originally used to heal ulcers.  The studies on dogs have shown that it works to heal leaky gut as well.  There are no human studies but I found it resolved many issues.  Thank you so much for your suggestions and ideas.  It feels great to have support and people who understand.

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#86 [url]

Jun 1 12 9:13 AM

linenup,
I do not have a firm diagnosis, but since this was a silent infection for years just depleting vitamins and energy I do not have much hope of finding a specific species.  I know the parasite is there because the problems still exist, it responds to drugs like antibiotics and berberine but then grows back.  I have limited resources and really want to resolve this issue so I can send my son to college and get a job so I am applying them to trying to find a cure.  The doctor told me that the reality is that there are 1000s of protozoal parasites that we have not begun to identify them (probably why there is a pptu forum)  A neuroscientist friend told me recently that "traditional medicine" has begun doing dna tests on stool to identify all of the present dna for bacteria, and other organisms to determine what should be there and what should not.  I would appreciate your suggestions for labs and specific tests if I need to pursue identification in the future.  Also if there are any anibody tests your recommend that my insurance company will cover I will pursue that, I know that they only show exposure not current infection but will give me something to go on.  In the last eight years my son and I have been on 2 cruises to the carribean which included time in mexico, belize and multiple islands.  He is also a scout so we have camped across the country and all over the east coast.  He also went to europe.  So our exposure is huge. Unfotunately the other family members with issues were also on the cruises. Thank you for the information.
d

PS, I think berberine merits consideration in any regimen it did work very well just that it can slow motility in the small intestine, says it shouldn't be taken long term and blocks absorption of b vitamins so don't take it at the same time. My son is now trying it and seems to be seeing some positive result.  I got it from my doctor but it is made by integrative therapeutics.

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#87 [url]

Jun 1 12 9:25 AM



Dizziebeth, 

Im glad the d and k were helpful, but again I would urge you to look into the protocol simply because it strengthen the immune system, there is so much more to it than meets the eye. The saliva secretions change and become anti bacterial. If that happens in the mouth it should also be happening in the intestines and possibly the colon.

  Here is a link to an article on the arthritis page that mentions deficiencies of calcium and vitamin d causing intestinal symptoms such as bloating and diarrhea.  Its also includes  info on vitamin A.

 http://www.arthritistrust.org/Articles/Calcium%20and%20Vitamin%20D%20Deficiency.pdf

The brand of bile I used was "Jarrow Bile acid factors". I think I took two to three capsules in between meals. I got a strong die off, which is mentioned in on the site. The doctor mentioned the stronger the die off the better the outcome. I actually thought I was coming down with the flu. What a great surprise that it worked so well and so quickly. 
I was also taking dr. ohhiras probiotic along with eating sunchokes to encourage probiotic growth. I can not help but think there was a synergistic effect going on.  It was the worst die off, I could tell something was happening.

Bile salts will cause diarrhea, which is a bit more uncomfortable for me than regular diarrhea.  This has kept me from trying this protocol for longer. It also caused me insomnia. However after reading from this site I may try longer periods of taking it inbetween meals. I usually use this protocol for when I get infections from eating out..symptoms of gas or diarrhea. It always seems to work.

I have also tried nutricology Ox bile and found it did not work so well even in large amounts. 


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#88 [url]

Jun 1 12 9:31 AM

The fact that bile salts were able to relieve this infection make me question my output of bile. 
I know lineup is not in favor of liver flushing (correct me if I am wrong). But I wonder if liver flushing would be helpful. 

Or possibly our bile ducts are infected and secondary infection are being caused?

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linenup

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#90 [url]

Jun 1 12 11:39 PM

[dizziebeth]  
I do not have a firm diagnosis, but since this was a silent infection for years just depleting vitamins and energy I do not have much hope of finding a specific species.  I know the parasite is there because the problems still exist, it responds to drugs like antibiotics and berberine but then grows back.  I have limited resources and really want to resolve this issue so I can send my son to college and get a job so I am applying them to trying to find a cure.  The doctor told me that the reality is that there are 1000s of protozoal parasites that we have not begun to identify them (probably why there is a pptu forum)  A neuroscientist friend told me recently that "traditional medicine" has begun doing dna tests on stool to identify all of the present dna for bacteria, and other organisms to determine what should be there and what should not.  I would appreciate your suggestions for labs and specific tests if I need to pursue identification in the future.  Also if there are any anibody tests your recommend that my insurance company will cover I will pursue that, I know that they only show exposure not current infection but will give me something to go on.  In the last eight years my son and I have been on 2 cruises to the carribean which included time in mexico, belize and multiple islands.  He is also a scout so we have camped across the country and all over the east coast.  He also went to europe.  So our exposure is huge. Unfotunately the other family members with issues were also on the cruises. Thank you for the information.
d

>>Yes this is what the forum is out to find out.  I am glad the doctor made the statement of the diversity of protozoa -   the best things we have going on at the moment is the testing from Metametrix which uses dna detection (PCR analysis) which is the only lab we know of at the moment.   As ilove stated there have been some people who had success with Dr. Cahill in which he was able to identify e histolytica as being the culprit.    Other than that the only other option is trying different combinations of either drugs or herbals in which we have a pretty good resource here at this forum.  


>>If you want to test through Metametrix, I am a licensed provider and can facilitate the test for you at rock bottom prices -   you can do the complete pathogenic assay which includes parasites, bacteria, yeast and probiotic levels and some other goodies (cost is $220) or you can do just the panel for protozoa which is around $80 or so.   

PS, I think berberine merits consideration in any regimen it did work very well just that it can slow motility in the small intestine, says it shouldn't be taken long term and blocks absorption of b vitamins so don't take it at the same time. My son is now trying it and seems to be seeing some positive result.  I got it from my doctor but it is made by integrative therapeutics.
>>you might want to discuss with your healthcare provider combining berberine with some pharamas or using other herbals such as andrographis etc - I have a thorough list under herbal category.    I also have a good homeopath who charges $75 for a complete course of therapy (excluding remedies) in which I am following her suggestion of using camphora 12x.   I will keep the forum updated if I find this helpful.    It would be helpful to know what you are dealing with as you might find the culprit then find the right protocol for that.   For instance it might be a simple case of giardia or cryptosporidia, possibly e histolytica or the pptu diagnosis.  

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#91 [url]

Jun 3 12 5:53 PM

Linnenup
I have had it.  I lost my job a few months ago and really need to try and get things under control quickly so I can find a new job or I am looking at disability.  I am still dealing with the rheumatoid arthritis and I am sure that if I could get things under control nutritionally it will go a long way in fixing the RA which didn't start until after this issue.  Also doctors are now linking RA with high AntiCCP to a bacteria found in mouth and gut gingivalis, I am sure this was a part of my bacterial overgrowth.  Complicating all of this is the fact that I have suffered from major allergies all of my life.  I try to avoid what I can and try not to take anything if I can help it but diet suggestions always frustrate me because I am anaphylactically allergic to several antibiotics, brown,basmati, jasmine and wild rices, (white rice is not an issue)  I am also very allergic to oats.  Wheat has absolutely no issues and my mildly elevated gluten tests dropped when we fixed the leaky gut.  Interestingly one of the things I noticed was that my allergies had gotten better over the last 5 years, who knew it was my immune system failng.  The more support I give the immune system the worse the RA seems to get.  Because of my allergies I am on orencia which is not a blocker but binds to t cells just to inactivate some of them and reduce the damage.  I am sure this is not helping my body fight the bug.   I have allergies to grass, ragweed, trees, weeds, molds, dust and pollen with oral allergy syndrome with many fruits and vegetables.  This makes the use of herbs a scary proposition.  The naturopath prescribed ginger and I was allergic, he prescribed moducare for the RA and despite the fact that your are not supposed to be able to be allergic I was.  My GP says that if there is anyone who has a bizarre or strange reaction it will be me. I am also allergic to ferrous sulfate so  need to be careful about what is in multivitamin supplements. I am anaphylactically allergic to the Test for TB - which seems to contain only inactivated TB.  I was prescribed milk thistle by the rhematologist but I have concerns due to ragweed allergies (suggestions there would be great).  Oops back to the original answer.  Thank you so much for your assistance.  I am doing Clarks paracleanse because the herbs are not mixed with rice or other things which could trigger allergies.  I am going to the L/X and one of the cocktails of antibiotics as a follow up.  If all of that fails I will be right back to you for the parasite test.  How long should I be off of everything before the test?
I have had just about every GI test you can name, and the GI wants a gastric emptying with SB follow through but my first gastric emptying was normal and I feel like things are moving just fine. I also feel like I don't need more radiation. I had 3 endoscopies, endosonograpy, biopsies, colonoscopy, Cat Scans, Ultrasound of liver, video capsule endoscopy, antibody tests for common parasites, multiple stool samples,  I was on 4 months of Xifaxin with rotating doses of Cipro and Flagyll, the Xifaxin seemed to take care of the bacteria but something else was not being affected by it.  I am praying that this will knock it out but if not testing will be my next priority.  This site and your advice has been a godsend as I have felt so alone and frustrated trying to figure it out and people just don't understand.  I will get to the naturopath about the berberine but It may be okay in combination with other herbs and hopefully the lactoferrin will make a difference.  Thanks again.
D

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#93 [url]

Jun 4 12 6:46 AM


dizziebeth, 

did you read any of the articles on the arthritis site? They boast a high cure rate (CURE!) using different antibiotics. There is a physicians list available. 

Also curious but what was your treatment for leaky gut? 

 

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linenup

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#94 [url]

Jun 4 12 11:56 PM

I am doing Clarks paracleanse because the herbs are not mixed with rice or other things which could trigger allergies. I am going to the L/X and one of the cocktails of antibiotics as a follow up. If all of that fails I will be right back to you for the parasite test. How long should I be off of everything before the test?
I have had just about every GI test you can name, and the GI wants a gastric emptying with SB follow through but my first gastric emptying was normal and I feel like things are moving just fine. I also feel like I don't need more radiation. I had 3 endoscopies, endosonograpy, biopsies, colonoscopy, Cat Scans, Ultrasound of liver, video capsule endoscopy, antibody tests for common parasites, multiple stool samples, I was on 4 months of Xifaxin with rotating doses of Cipro and Flagyll, the Xifaxin seemed to take care of the bacteria but something else was not being affected by it. I am praying that this will knock it out but if not testing will be my next priority. This site and your advice has been a godsend as I have felt so alone and frustrated trying to figure it out and people just don't understand. I will get to the naturopath about the berberine but It may be okay in combination with other herbs and hopefully the lactoferrin will make a difference. Thanks again.


Not a big fan of the clark - no one has reported any beneficial effect but certainly worth trying -  again identification is the key here so either Cahill or MM would be my top picks.  

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#97 [url]

Apr 4 13 2:38 PM

Hi rxseahawk, initially I was getting bleeding gums and bleeding front roof of mouth but then after eliminating lectins this issue seemed to subside. Even Vit C powder would cause the roof of my mouth to bleed due to a filler or the cellulose in it (my guess not proven).

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#98 [url]

Jun 2 13 1:12 AM

Hi everyone, just want to say this forum seems to be pretty helpful and informative, glad to have found it. I've decided to try here instead of Curezone because although I found some of the information that posters give me to be helpful, I remain skeptical because many of them aren't cured. Linenup will know me from there as Toxicrose. Anyway my symptoms are, from head to toe:

- Neurological: Depression, anxiety, panic attacks (not had any recently), fatigue, poor memory and sometimes feelings of disorientation .
- Head and face: Numbness, aches, pains, tingling in my head/scalp. Gritty feeling around my eyes, eye twitching, floaters, dark circles and spots (particularly on my forehead).
- Body: Bloating, sugar cravings, loose stools/occasional diarrhea, some enuresis, shortness of breath, bad breath and tingling.

I think that that is all of them. I hadn't experienced the symptoms in my head and eyes until after I'd tried Mebendazole (only one tablet) which did seem to shift some worms. I haven't tried any other medication for parasites/possible protozoa/candida since because I still have no clue what exactly it is that I have (and haven't been able to obtain anything else). I suspect it to be possibly a mixture of all 3. Blood tests that I've had done in the last few months have shown that I'm very deficient in Vitamin D and Iron. Also when I went to Hospital for my chronic, ongoing headaches, I was found to have ketones in my urine and told that I need to be eating more carbohydrates. The reason for this being that for a while I had been limiting my intake of starchy carbohydrates, in the hope of weakening any parasites and killing off Candida. Upping my intake of carbs has not gotten rid of the symptoms in my head/scalp area. I want to test with Parawellness labs, as I'd already talked to briefly about with Linenup but face the problem of living in the UK, as they don't send their tests here and not to mention the expense of it. However, I am currently saving.

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#100 [url]

Jul 19 13 11:04 AM

I figure as a new member here I would give a quick synopsis of my history as well as past and current symptoms.


I got sick in 2006 after a 2 month stay in Indonesia.  I experienced extreme fatigue, explosive diarrhea, heart palpitations and chest pain, flatulence and burping, brain fog, dizziness, extreme anxiety attacks, rapid heart rate, tingling in hands and fingers and low back pain.  After several O&P stool tests I was diagnosed with Blastocystis and treated with a 7 day course of Flagyl.


Of course that only diminished but didn’t resolve my symptoms.  I was told that I was cured and that my symptoms were now a result of developing post infectious IBS.  Sound familiar to anyone?


I kept pressing doctors that I still had the bug and I was given a standing order at the lab to do an O&P test any time I wanted.  After several negative results I tested positive once again for Blastocystis.  


This time I was prescribed Flagyl and Yodoxin which really made me feel better.  In fact it cleared up all of my symptoms.


But slowly over the course of several month my symptoms returned although in a more subdued form.  In-between treatments I had at times been diagnosed with yeast and given an oral anti-fungal medicine which did nothing for my symptoms.


Since then I have been treated empirically with a combination of Tetracycline + Alinia + Septra, Rifaximin (2 separate times) and more recently Doxycycline + Yodoxin (which made my stools return to normal for a few months).  After each treatment the symptoms slowly returned.


The Doxy+Yodoxin treatment was just before I took a 3 month trip back to Indonesia where I felt good.  Stools were near normal and I had tons of energy and no heart palpitations.  


But since returning my symptoms have progressed.  The heart palpitations are the most concerning.


My current symptoms are:


  • Mushy stools with occasional diarrhea (w/ undigested food particles) 2 to 3 a day
  • Occasional fatigue coupled with brain fog
  • Periods of vertigo
  • Upper left epigastric pain (never had this previously)
  • Heart palpitations (almost daily now – had an echocardiogram done which showed a health and strong heart)
  • Weight loss (I’m 6’2” and have been as low as 144 pounds)
  • General feeling of not being well
  • Itchy skin and anus
  • Belching especially after meals
  • Eating sugars and carbs increases symptoms (usually)


Saw a naturopath doctor who thought I may have SIBO.  Took a hydrogen breath test that showed a predominance of hydrogen producing bacteria.  GI doctor disagreed with the diagnosis but prescribed Rifaximin anyway which did little to curb my symptoms.


Currently I am awaiting results of a full blood workup and thyroid test. 


Two years ago I had a colonoscopy and endoscopy which only found evidence of GERD (Barrett’s esophagus) and I was told to stay on PPI’s forever.  I’ve since stopped taking PPI’s as I don’t believe they are safe for long term use and fully believe that my GERD (which has no symptoms) is caused by whatever bug I might have.  I’m taking d-limonene instead.


Having just returned from 3 months in Indonesia I have not ruled out the possibility that I have picked up something new to compliment my initial infection.


I saw a GI doctor a few weeks ago after waiting nearly a month and a half to get in who impatiently listened to my symptoms and concerns and then said it sounded like IBS.


Anyway, my story seems so similar to many of the stories here in terms of treatment approaches taken, typical medical responses and symptom list.


I’m really curious regarding all the diagnosis of e. histolytica.  It almost seems like it is a common commensal with a blastocystis diagnosis.  I have had a blood test for it done which came back negative but I wonder how accurate it really is?


Lots of great information on this forum and I wish everyone the best with your battles to get well.

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