# IBS or parasitic infection - need some wisdom from IBS sufferers



## LilyWillow

I would like to tell my story and get opinions of those with IBS.

I'm sorry this is so long.

I am 54 years old and have been sick since August. I've never had any problems with my stomach or bowels. I have no family history of IBS or any problems like this. No problems with any foods at all. I have a tendency to gain weight because I love food. Lost that when I became sick.

In August my 18 year old daughter went to a 3 week tech camp at Google and was housed in the MIT dorms. She learned that her roommate was having digestive problems and was doing an elimination diet on doctor orders trying to figure out what she had become sensitive to. This roommate had also been to Peru for spring break. Most of the students in this program were international and had come from other countries. Two and a half weeks into the program my daughter told me she thought she had food poisoning. She had been eating some different foods and she thought the Skate she had for dinner the night before made her sick. She came home sick but was better again before she left for University. I figured it was food poisoning and forgot about it.

A week after she left for school (two weeks after she returned from the camp) I suddenly got really sick. It felt like food poisoning. It started with small gas (no gas pains) just lots of gas to release in small bubbles. Then the stomach pain started. Up in my stomach not my mid section. Then the weird* chest pain started. MY bowels began to clear out. I called it diarrhea but it wasn't watery. I only had one watery movement and that was the last one during this sick session. The stomach/chest pain didn't let up for three days. These were the most intense gut symptoms I've ever had. I felt like I was losing my mind. The symptoms sent me to my General Practice doctor on the fourth day. He ran blood tests. I really did feel like I was having a nervous breakdown but I knew it was from my stomach illness.

*When I get stomach flu and vomit I get this weird pain that make me feel very desperate to make it stop. I howl and carry on. It is a mental type disturbance. I don't know how to explain it except to say it is a feeling of anxiety and desperation.

When my GP Docs office called the next day with the results they told me everything was normal and hung up.
So nothing was wrong?

I was totally out of balance and I knew it. I was having trouble coping with the feeling this was giving me. I called my Gyno to see if my hormones could be causing it. I wear a hormone patch for surgical menopause that happened when I was 36. She had me come in for more blood tests. I was still really struggling mentally and was afraid I might do something desperate. So after my blood draw I swung by my GP doctors office and asked to talk to his nurse. I explained to her about the feeling in my stomach and chest and I felt like I couldn't cope and really needed some help. She talked to the doctor and came back and called in a Rx for Clonazepam. By the time I picked it up the feeling was starting to decrease so I never took it. The next day my doctors office called and he wanted to see me. I went in the next day and he talked to me a little. By this time and with my altered mental state he had me convinced I had done this to myself, panic attack, and was under too much stress. His Rx was to tell me I needed to be on a lifetime dose of Prozac. I walked out and plan to never return to him.

I have never had mental illness or imbalance. I have undergone great stressors in the past (all my children born preterm and my daughter was 14 weeks preterm) and never needed medication. I don't like taking any drugs at all. I have dealt with stress when I was younger really well. I know I don't need to alter my brain for the rest of my life. He did have me thinking that maybe I did need to see someone so I called two different clinical psychologists. Both had long wait times to get in. I was still feeling anxiety and was crying easily. I really felt I needed help. The first psy doctor had a cancelation and called me to come in. Talking to her really helped but the feeling and pain was not affected. I actually have my ideal life and no real stress right now.

This illness makes me feel like I should be living in a rundown room on the bad side of town and all my family is dead . NONE of this is true. The Psy Doc explained how my brain was trying to make up reasons why I'm feeling so bad. It doesn't understand the emotional pain I'm feeling from my stomach. This makes sense to me because my friend sent me an article about the gut brain connection and how there are more neurotransmitters in your gut then there are in your brain. The Psy Doc also told me about real panic attacks and I realized I wasn't having a panic attack. This was being caused by my gut not the other way around. She suggested I test the medication to see how I would react to it just in case I need a rescue med in the future. She also said the dose was too big and to cut it in half or quarters. She indicated it was out of line for my doc to recommend the Prozac. She then went on a two week vacation.

During this time I saw the second Psy doctor. Talking to her during times when I felt better. She agreed I didn't need meds. We talked a lot about my life as it is and how I really don't have any stress or problems that would cause me to become sick. I was looking for mental causes and not finding them. She agreed with my testing the med to see how I react to it. The next time I felt bad I tried it first a quarter with no effect and then half. It made me feel drugged but had no effect on my stomach chest pain or anxiety at all. I never took it again.

Over the next two weeks I started to realize I was having mini attacks (quick processing i.e. yellow malabsorption not diarrhea but I called it D because I wasn't educated on what this was) on Wednesdays and Saturdays, Then a big attack with the stomach/chest anxiety every two weeks usually on the weekend. Sometimes it varies a few days. During the second attack my husband was in China and it was just me and my eldest son (23) at home. I made him dinner but could not eat myself. He came to me after he ate and told me he was sick, felt like food poisoning. I thought I poisoned him by not cooking the chicken enough







.

I mention all this to my daughter for the first time and she tells me she has had repeated sickness too, on a schedule twice a week, just like me.

A few weeks later my son tells me he has been repeatedly sick on the same schedule I have been.

I'm the only one with the chest/anxiety symptoms but I know everyone body reacts differently to things and since I feel like this when I have the flu it makes sense that I would be different in this aspect.
My daughter and I have lost weight even though we eat normal meals and snacks. Initially I lost 10 pounds. Now I regain and lose the same 5 pounds depending on where I am in the cycle. I always know when I am going to be hit with a bad attack because I lose it all in one day then wham I get symptoms.

My conversations with the psy docs had me convinced we are infected. I advise my daughter to write up a history and get to the medical clinic on campus. My Husband and I are supposed to board a 2 week Mediterranean cruise and I really want to be cured before we go. I'm researching our symptoms online and see the CDC outbreak of cyclosporiasis in June-Aug. I call my GP doc. He says no it's not in our state. I had already looked at the CDC map and knew it was so I can see how this stuff goes under reported, but he will do a fecal test and give me the meds since I am leaving on the cruise. I do the test during a time when I'm not symptomatic. The nurse said it doesn't matter to the test. The test is run in the doctor's office. I'm told to refrigerate the samples over three days. My daughter is told no refrigeration over the three days. It's the same multi vial test.

I finish the meds before the cruise. They didn't affect my stomach at all. The tests come back clean. My daughters campus testing comes back normal too. They told her she had IBS before even testing her because of her age. She had to argue with them to get the test. We are both told there is nothing wrong with us and when we disagree we are told to see a gastroenterologist. My daughter and I are still having attacks. She reports to me her new boyfriend she has only known for two/three weeks is now sick too. My husband tells me he is sick. Both men discount their symptoms as something they ate. We all did this at first too. I made an apt with a gastro doc it will be a two month wait to get in.

I'm really sick with the chest anxiety symptom the two days before we are to fly out for the cruise. Not as bad as the first attack though. The symptoms seem to be losing some of their their intensity. We debate canceling but will lose all our money. This is a once in a lifetime 25th anniversary trip. My GP doc says I am not contagious and I can travel. I decide not to cancel. This will pass and I should be okay with only mild symptoms for two weeks.
We catch a bad viral bronchitis on the cruise. The cruise doc puts me on a z-pack so I don't develop pneumonia. It does not make my stomach sick or better.

I continue my by weekly mild symptoms on the cruise, not bad at all, then get hit with a not so bad 2 week attack on the way home. Then two weeks of feeling like it is really mild and may be gone altogether. I even told my friends I felt it was gone. Nope I get hit with the next two week attack and it is bad. I feel like I have food poisoning again. Without my telling my daughter she tells me a similar timeline. She felt she was getting better and the symptoms were becoming less severe, almost gone. Then one day she writes she feels worse than the first bad attack. She said this happened before me but she didn't tell me because she didn't want me to worry. We look at the time line and its two weeks before me.

While waiting to be seen by the gastro specialist we settle into a routine and symptoms seems to be decreasing again. Pain in my stomach and chest, heart sometime flopping around like missing beats or extra beats, and quick processing malabsorption. My meals are gone within six hours of eating them except for dinner because I sleep through the night. I feel great when I wake up. I have a bowel movement then my symptoms start. When I do have symptoms going to the bathroom does not make me feel better. I do not have cramps or gas pains in my intestines. Twice I have had cramps in my stomach. Up in the triangle space of my ribcage. Mainly I feel sick to my stomach and have chest pain like I have suffered a great personal loss. My stomach vibrates like I am nervous but I'm not so it makes no sense. I have intense hunger like I'm starving, even after eating a meal, I don't really want to eat. Food has lost its appeal. I was a foodie now I force myself to eat.

The Gasto doc mentions Giardia and says she will do a battery of tests naming them all and some she hasn't thought of..and will get a infectious doc involved if she has too. I feel great about her. Then she says she will not even consider my family being symptomatic. She will look at me and only me and wants to start all testing from scratch. First blood then fecal testing. She wants the fecal to be done when I am at max symptoms. The lab gives me one empty jar and tells me I have to return it within two hours of sampling. Both labs are in the hospital med building. The office gal talks like she has no confidence in either one and tells me its just between me her and the walls.

A month passes and every time I'm at max symptoms it is Friday night or the weekend, lab is closed. Then when it happens not on a weekend it is the thanksgiving holiday. Wednesday night....lab is closed. Out of frustration of being sick all the time this month and not getting this done I do the sample on a Monday morning after being sick on the weekend. I stop by her office and talk to the office gal who tells me one jar was the wrong test and she's never heard of the two hour limit. She orders a test from another lab and says to follow their instructions. I get their bottles but their hours are not better and they have no instructions on time to lab. I find an internet article talking about how time is a huge factor in positive parasite fecal testing. I also do their tests not at peek symptoms. All tests come back normal and in my conversation with the gastro doc on the phone she offers to treat me with ten days of 500 mg 3x a day flagyl and she wants to do an upper endoscopy and colonoscopy because there is room for error to miss parasites in the tests. I start to ask her about if she could also not see anything...she cuts me off and says of course and she would then say I have IBS. WHAT? I meant could she miss seeing parasites that are present and she has jumped all the way to IBS. Now I am mad. I say Sure I caught IBS from my daughter and my son caught it from me. She back peddles and offers the day after Christmas or Friday for the procedures. Really prep on Christmas? I take Friday. I now feel like my gastro doc has no clue about my symptoms and has dumped me into the catch all IBS diagnosis even before she has finished testing me.

Five days later had terrible sharp stomach pains on Monday with diarrhea (not real watery but the malabsorb kind). It suddenly stopped at 9 pm. Then I felt better than I have in 4 months (normal) for the next three days, including the prep day. Malabsorbtion hadn't stopped but it has slowed down the processing. After the tests the Gastro doc tells me everything is normal and again says I have IBS. She took 1 biopsy from the esophagus, 1 stomach, 3 upper and 3 lower bowel. She will get back to me in two weeks. She didn't give me the Rx for Flagyl.... yet.

I started a 2 week attack as soon as I got home from the test. Chest pain and sick to my stomach, anxiety is bad again. I just want to isolate myself from everyone which kills me because my kids are home for break and I have been looking forward to spending time with them. My emotions and brain are being altered by this gut illness and it really scares me. The intense chest stuff lasts three days and it is beginning to wane again. I am still sick feeling anxiety but not the bad pain. I have tried taking Vitamin World® Probiotic 10 when really sick. I've gone through an entire bottle and felt no difference when I take it.

Everything I read here about IBS tells me I don't have IBS. I have no midsection, below ribs above hips pain or discomfort. This seems to be the hallmark symptom for most? I can have some discomfort in my low abdomen (pelvis) when I need to evacuate during a really bad attack. I don't have watery diarrhea. I NEVER have to run for the bathroom. When I feel the need to go I can wait for hours and I have done this at the movie theater. My pain is in my stomach, above my rib line. Chest pain in the center, slightly to the right of my sternum. I feel a heavy emotional loss at times even thought I have none. This is always preceded by stomach pain and nervous stomach even though I am not under any stress or nervous conditions. I'm not a nervous person. I'm really considered laid back and quiet as are the members of my family. I get pain in my back and shoulders but this may be bad posture from my stomach pain. I see no changes or effects from what I eat or don't eat. The intense bi weekly symptoms generally last 2 to 3 days then lingering after effects slowly go away. I'll have maybe one good day then the pre effects that usher in a mild attach will start. I don't have a lot of gas. I will pass gas once or twice a day but this seems to have come to me with age and not as a result of the illness starting. I will belch two or three times a day and never did before I was sick. So basically I am sick all the time with very little symptom free time. Most of my days are either ramping up or down from a mild or big every two week attack. It is the cyclical schedule that makes me think there is something living in me causing this. My symptoms follow its life cycle. Is IBS cyclical on a schedule?

The men who caught this got better after three attacks. Or at least they say its mild enough they are not sure they still have it. My daughter and I see a correlation to hormones. I change my Alora patch on Wed and Sat. Her menstrual cycle will move to after an attack even if she is due a week later. Maybe this is coincidence. She says her attacks this month have changed from twice a week to once a week and today when I asked her she said it has been two weeks since her last attack. She thinks she may be better now. She will need to go three months before I will be convinced.

So my question to those who have IBS. Does this sound like I have IBS or are we really infected by something and need to fight to find out what it is?

Thank you to those who stuck with reading this and will offer their opinion.

EDIT: So mad right now. I just received access to my original test results. I originally asked to be tested for Cyclospora. We all got sick during the time the CDC reported the outbreak in the USA. I see in the test results I was NOT tested for Cyclospora. It states that specifically. I just looked at the tests done by my gastro doc and she too did not test for it.

Edit: In mid December my daughter recovered. In January my son told me he believes he is still infected but mildly. I did the FODMAP diet for two weeks and it made absolutely no difference.


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## Kathleen M.

Going to skip to some of the questions at the end.



> Everything I read here about IBS tells me I don't have IBS. I have no midsection, below ribs above hips pain or discomfort. This seems to be the hallmark symptom for most?


Completely painless watery diarrhea is often not IBS, but any kind of abdominal pain or discomfort (like bloating) is consistent with IBS. Since the colon is in all four quadrants the pain location greatly varies.



> I can have some discomfort in my low abdomen (pelvis) when I need to evacuate during a really bad attack.


That sounds like IBS. The pain/discomfort builds up right before a BM then goes away afterward. That is a classic IBS pattern, almost diagnostic for IBS as it really isn't the pattern for much of anything else.



> I don't have watery diarrhea. I NEVER have to run for the bathroom.


Most people with IBS do not have watery diarrhea. They may have excessive urgency (not required) but that is for ALL stool types, you can have extreme urgency when constipated and feel like you have to run for the toilet then have a stool that is hard to pass.

Pain can be up in the chest (as the colon runs under the ribs, not only BELOW the ribs. Central is more often stomach than colon, but you can have functional dyspepsia (like IBS but in the stomach/upper GI system).

For what it is worth, many doctors use IBS to mean ALL of the functional bowel disorders as they don't have different treatments for the same symptom if it is from different functional GI disorders.



> Is IBS cyclical on a schedule?


It can come and go, sometimes more regularly, sometimes more irregularly. There is no set pattern that is always IBS or never IBS.



> My daughter and I see a correlation to hormones.


Really common, but then woman without any GI problems any other time sometimes notice their stools are a bit irregular during/around their period.

Sounds like post infectious IBS/Functional GI issues. The organism is gone but the fighting it off (and all the chemical warfare your immune system uses to get rid of it, not just the damage from the organism itself) damages the body. With Functional GI problems that is in the control and sensory apparatus, not the lining of the colon.

So it could be IBS/Functional GI issues. PI-IBS often fades over time (and if you heal up from the GI infection completely in the first couple of months it is considered normal healing, not IBS). It doesn't always fade, but often in the 2-3 year later it is much better than the first few months after the GI infection.


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## LilyWillow

Thank you for responding Kathleen M. It really does help. I will look for information that will help me to get back into balance.


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## Kathleen M.

Some things to think about are low fodmap diet, probiotics, a mind/body approach (clinical hypnothrerpy for IBS is the most available or a mindfulness based stress reduction class).


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## LilyWillow

I'd like to update my post infection IBS story.

My daughter reports to me that she has recovered from this. Her body, all functions including female have returned to their normal schedules. She no longer has any symptoms. So everyone that was infected except me are back to normal, sigh. I am very happy for my family but I wish I was better too.

I believe prep-ing for and having the upper endo and colonsocpy upset my system so badly it set me back to where I was back in September. Has anyone else had this type of adverse reaction to this testing? I had a routine no problems colonosocpy a year ago and had no problem with it but it was a different doctor and they gave me a different prep.

I am doing the low FODMAP diet. I have noticed no difference as gas was not one of my issues but I will continue. I am taking the VSL#3 probiotics and will be calling my clinical psy doc tomorrow to start seeing her. Thing is I really don't have any stress to deal with. Except the newly forming stress that doctors are not willing to help me figure this out so I can get healthy.

The anxiety reaction I've had after this test was close to the worst since getting sick. The first time I ever had anxiety symptoms was in response to this gut infection. This anxiety has lasted for more then a week with no break. In the past it was three maybe 4 days then it got better as my gut got better.

I really do believe that there is a gut brain connection and my anxiety is because my gut is out of balance somehow. How does one fix this is the big question. I am once again feeling like I am really mentally ill and the doctors have no understanding and couldn't care any less









My Gastro called me with my biopsy results. She asked me how I was and I told her I was terrible and had had a terrible attack after coming home from the test. She said I'm sorry. No advice or concern for what that meant or was doing to my health.

She just launched into the test results saying they found nothing out of the ordinary everywhere except the esophagus. I don't have celiacs. So all normal. Then I asked her if she tested for pancreatic enzymes. She said there were none and I asked if that meant my pancreas was normal?. She said not necessarily. I wondered about this because when my stomach hurts I have pain that radiates from my stomach to my back like a have a pole stuck through me, and with the yellow malabsorbtion it seems my pancreas should be checked. So now because I asked she is ordering an MRI of my pancreas. I believe it will be normal.

So then I asked her what was up with my esophagus and she said, well there is an abnormality and started to tell me about cancerous indications, cut herself off and decided to read the lab report to me. Mind you this is over the phone. I've only ever met with this doctor in her office once in 2.5 months. As she read the description she stops and says whoops I read that wrong the first time. There is noting wrong I missed the word NOT. You are completely normal.

At this point I asked her to send me a copy of everything she has tested me for. I've never been told what I am normal for just that tests come back normal. I have no idea what I have been tested for. Then she tells me after this last test we will either have to agree I am Severe IBS or I will have to travel to Boston for a second opinion. I guess she thinks she is the best and only doc in my area that could form an opinion, lol.

I am very sad at this point that I can't seem to get any support from a doctor. I really wish I could find a doctor that practices integrated functional medicine for whole health that really wants to help people get better. I am sick of MDs with their checklist. Its just like internet customer support from India. They have a script and if what you say doesn't fit the script your out of luck and they just keep repeating the same thing over and over.


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## Adidaphat

Dear All,

In order to know you get IBS or not, you need to have TESTS from Doctors. Nobody can say you are getting IBS without Several Tests.

I am 48 years old and got IBS nearly 5 years. I understand well how do you feel when getting this IBS. at the current I stop all medicines just doing the following things:

1/ Taking Turmeric Curcumin + Fish Oil everyday (Curcumin 95% 500mg). Excellent treatment. I have been taking this 2 weeks (4 capsules per day), will use this for a long time. No more IBS. (Notes: Curcumin is being used in my country for disease treatment related to stomach and colon)

2/ Doing Yoga 1 hour per day (Monday to Friday)

3/ Eating Yaourt and fresh food, no Canned food. (eat enough food for meal, do not try be full)

4/ I still drink coffee every morning and sometimes beer for Party.

Keep your mind peaceful, DO NOT WORRY anything, Do not think about your IBS, try to laugh more.


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## someguy79

LilyWillow said:


> I would like to tell my story and get opinions of those with IBS.
> 
> I'm sorry this is so long.
> 
> I am 54 years old and have been sick since August. I've never had any problems with my stomach or bowels. I have no family history of IBS or any problems like this. No problems with any foods at all. I have a tendency to gain weight because I love food. Lost that when I became sick.


You and I are in the same boat.

Before 09/2013, I never had any kind of GI issues at all, and no sleep issues either.

I was outdoors and picked up a skull of a dead squirl or rabbit, a day after all my symptoms started, infection in the toe, joint pain, gas, constipation. Soon I got GERD (Acid Reflux), and gastritis. Skin rushes, all sorts of nasty stuff.

It's been 5 months now, I lost 35 lbs (I'm 34) and I also started road cycling.

What I learned through these 5 months is that most GI Doctors are clueless, and have no idea how to treat IBS. They will most likely tell you to (1) drink more water, (2) eat more fiber, and (3) reduce stress. I laugh my @$$ off everytime I hear this

Stress can aggreviate IBS, but it will not resolve it.

My first GI made a whole bunch of money on my behalf (and I bet he still does on behalf of others) with his endoscopy and colonoscopy. So great, that ruled out Crohn's and UC. So then he tells me I have IBS and pumps me with with drugs. I fired him.

2nd GI Doctor puts me on Antibiotics and anti-spasmadics for 10 days, it helped a lot, but didn't cure the issue.

After dealing with this problem for 5 months (and almost hanging myself), I came across this website:

http://ibstreatmentcenter.com/

After reading all the sections on this website, and comparing their stool tests to mine, I decided this is where I am going next. Will be more than happy to share with you what happens in the next months. It seems like the standard stool tests can miss certain parasites and/or bacteria that may be the cause of all the issue. The other half may be food allergies.

Moral of the story, you can drink as much water as you want, eat as much fiber and tan on the beach all day stress free, the IBS will not go away.

And all these stories about your bowels not functioning normally, a big load of BS.

*Most GI Doctors *and drug companies are making a KILLING off this stuff.

My .002 cents.


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## nori641

As my son 32 have this problem since 2010 till now ,diarrhea and low appetite . many GI doctors fail to diagnosed his disease.one say Crohns

other said intestinal TB but all wrong !!!!!! some of doctors said we are sorry for your son disease. Do your hear or imagine a such

doctors say that !!!!!!?? friend or relative say sorry not doctor .

unfortunately infectious diseases or GI specialists here HAVE NO EXPERIENCES with parasitic diseases and also there is a SHORTAGES AND LACK

IN LABS.


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## thetoiletlife

It sounds like many of your symptoms might be a parasite infection. I'm a 24 yr old male that has IBS. I also have had intestinal parasites in the past. I was deployed to Kuwait when I was in the Air Force and contracted parasites from food prepared by third-country nationals. I had IBS already so I knew that my extreme symptoms were not in line with IBS. Long story, short I had many of the symptoms you described including pain after BM's, frequent BM's, chronic abdominal pain, loss of appetite, low energy, brain fog, and weight loss (I went from 175 lbs to 145 lbs). My symptoms continued for almost a year to the point where life almost became unbearable. I had stool samples, lots of blood work, CT scan of my abdomen, small bowel series CT scan, colonoscopy, and endoscopy. Everything turned back negative and doctors kept dismissing me with the diagnosis that my IBS was outta control. This was NOT the case. I met a lady that had traveled to India for six months and described her my symptoms and she told me I had parasites. I said No because I've had parasite and ova stool sample done that was negative. She insisted I try a parasite cleanse. I had nothing to lose because my quality of life had gotten so bad I didn't want to exist anymore. Sure enough, I purchase a product called Paragone by Renew Life (you can find it on their website or amazon) and five days later I was expelling worms and little egg sacks in my stool. YES!!! The results were visible. I immediately felt my brain fog lift and my abdominal pain lessen by 90%. I'm still in the healing process now and the parasites did a number on my intestinal lining. I'm still hyper sensitive to many foods and the parasites did no favors to my IBS I was diagnosed with prior to deploying to Kuwait. To sum this up, doctors DO NOT know how to properly test for parasites in this country. I spent many months crying out for answers and going to docs for multiple tests but my answer came in a $30 box of parasite cleanse I bought at a farmer's market. Everything I've read about people that have had parasites always says "the doctors never caught it.". For $30, you have nothing to lose trying an all natural parasite cleanse like Paragon. I'm not a sales person, just a 24 yr old guy that got my life back and is forever greatful for a random lady I met who told me to buy it. Its just one more thing to check off if it doesn't work for you. I highly recommend this product to all Americans who have travelled overseas and returned with unexplained digestive disorders or just to people who consume lots of sushi or eat their steaks not fully cooked. I honestly say didnt believe parasitic organisms existed in me but what I saw after paragons felt like a surreal horror movie. I hope this helps and I hope you find healing and peace again in your life. God bless. Anyone interested in chatting about IBS or parasites please message me.


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## LilyWillow

thetoiletlife, I do believe that I am infected. I am suffering so badly that I have now gone to an infectious disease doctor, head of St, Vincents Hosp. He says no way can I still be infected unless I have an auto immune disease. He tested me for HIV and Immune stuff and I am normal. Next up is a ultrsound to see my pancreas. I know this will be normal too. I am so frustrated and feel so sick. My symptoms never stop now.

I have been to Dr. Chan up in NH she is an naturopath that has had a similar experience in her life that caused her to leave medicine and become a naturopath. She has me on some anti parasite supplements but I feel so sick. The mental stuff has a firm grip on me. Dr. Chan says as the bugs die they give off toxins that mess up my mental health.

1) Biocidin by a company called Bio-Botanical Research - 1 tablet 2x / day for 7 days on, 7 days off.

2) GI Microb-X by Designs for Health - 2 capsules 2x / day 7 days on, 7 days off. (alternating with the Biocidin).

She says it will take 6 weeks and I will get sicker before I get better. I have only been taking the Biocidin for 5 days and I can't cope.

I also started seeing a psychiatrist who put me on lexapro. The side effects were so bad for me. I was on it for two weeks and now I am wanting off. I think it may be making me worse not better.

I feel like I need to be hospitalized for someone to take me seriously and help me. I have now lost 30 pounds. that doesn't include the 20 pounds I lost before getting sick.


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## thetoiletlife

LilyWillow said:


> thetoiletlife, I do believe that I am infected. I am suffering so badly that I have now gone to an infectious disease doctor, head of St, Vincents Hosp. He says no way can I still be infected unless I have an auto immune disease. He tested me for HIV and Immune stuff and I am normal. Next up is a ultrsound to see my pancreas. I know this will be normal too. I am so frustrated and feel so sick. My symptoms never stop now.
> 
> I have been to Dr. Chan up in NH she is an naturopath that has had a similar experience in her life that caused her to leave medicine and become a naturopath. She has me on some anti parasite supplements but I feel so sick. The mental stuff has a firm grip on me. Dr. Chan says as the bugs die they give off toxins that mess up my mental health.
> 
> 1) Biocidin by a company called Bio-Botanical Research - 1 tablet 2x / day for 7 days on, 7 days off.
> 
> 2) GI Microb-X by Designs for Health - 2 capsules 2x / day 7 days on, 7 days off. (alternating with the Biocidin).
> 
> She says it will take 6 weeks and I will get sicker before I get better. I have only been taking the Biocidin for 5 days and I can't cope.
> 
> I also started seeing a psychiatrist who put me on lexapro. The side effects were so bad for me. I was on it for two weeks and now I am wanting off. I think it may be making me worse not better.
> 
> I feel like I need to be hospitalized for someone to take me seriously and help me. I have now lost 30 pounds. that doesn't include the 20 pounds I lost before getting sick.


I did a little research on those two supps that your naturopath doc has you on. They do have active ingredients similar to the paragone (black walnut hull & seed oil, wormwood, and grapefruit oil) so those die-off symptoms you are feeling are most likely legit. I personally felt like death the first few days I was on Paragone. I had cramps, headaches, bloating, and just a general toxic feeling in my body. These are definitely die-off symptoms. I honestly didn't feel like a new man until day 7. That's when the cleanse really started making progress and I saw results. Paragone also comes with a recommended anti-inflammatory diet suggestions that also helped me cope with the pain and inflammation. What concerns me is your weight loss. I also had crazy weight loss. I went from 175 to 140 lbs. That is drastic at 6 ft tall since I was already a fit dude to begin with. I looked like a skeleton. Food was my enemy because no matter what I ate, my body would get sick the following day. My daily routine was to wake up, immediately have a BM, and then my day would go downhill from there with pain and abdominal inflammation to the point where I didn't eat and had zero appetite. To be honest, I ate for survival. Sometimes just one meal a day. Life got rough and I can completely understand your frustration and anger. These pains will definitely take a toll on you physically and mentally too so you have to be strong. I lost confidence to leave my house, I stopped going to social events, and my whole life was put on hold and I was a slave to the bathroom. I feared for all my future plans, I thought I would never meet someone because I couldn't even date due to my chronic pain, and I just lost all zeal for life. I had NO life and the only thing I wanted in the world more than anything was an answer to help heal myself. There were some days when I let the pain and frustration win and then I would be miserable to the point of being paralyzed on my bed and just sobbing. There are some days when I would tell myself I'm gonna beat this and I would go for a jog or long walk and just have a really optimistic attitude about finding treatment and healing. To sum this up, you gotta take the good days with the bad and know that there isn't an immediate answer to your problems. It sounds like you are on the right track though. Keep getting modern medical tests done as well as seeking answers from your homeopathic doc. Keep researching and looking for people that have similar symptoms. It took me a year to make any progress and my answer came from a middle-aged lady I met at a bible study. This was after I had been to my primary doc a dozen times and spent over $500 on visits to a private homeopathic doc. Paragone worked for me. It really did and I sing its praises because I have somewhat of a life back.. I'm still hyper-sensitive and I control my IBS but life is much more manageable and I can actually dedicate some of my thinking to things that don't involve my pain or symptoms or where the nearest toilet is when I'm in public. It's a life I can manage now. I really hope you stick with your parasite cleanse and fight through the side effects. I know it's rough but it would still be more one more thing to check off if it doesn't work. I'm gonna post a link for Paragone for you. Please read some of the customer reviews and see if you can find your symptoms. You will notice that most people all say that had "unexplained illnesses" that docs couldn't find. I thought it was all malarky but it's true. Parasitic infections are not detected by docs unless something is coming out of you. You might be infested and there are producing and living fat and happy in your intestines reaking havoc. You will get dismissed time and time again by docs because they think you are crazy and think you have mental issues. Just be your own advocate and insist on getting every test done on yourself so that way when everything comes back negative, you can rest and know for sure it was parasites and not something terrible like Crohn's, IBD, diverticulitis, cancer, or something else that is serious.

http://www.amazon.com/Renew-Life-ParaGONE-Kit-Bottle/dp/B0015R9DS2/ref=sr_1_1?ie=UTF8&qid=1393401308&sr=8-1&keywords=paragone


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## LilyWillow

This is an update....ultrasound of my abdomen was normal and the infectious disease doctor tossed me to the curb.

I am still sick and very weak. Still slowly losing weight and at this point I'm tired of force feeding myself. My gut is so messed up that I go back and forth wanting to end my life.

I do go to a clinical psychologist but honestly other then my complaining about being sick and her offering alternative med people to see she is really not helping me in any mental way. I I had to get off the Lexapro. The side effects we so bad I had to start tapering myself off after two weeks. I got so weak I had to lie down after taking a morning shower, was shaking, muscle twitching, depressions, stomach pain after taking a dose. Was awful and then my big bad end of month attack hit and the drug was no help. I felt better after getting off it until my next two attacks hit then I was back to what is now my unnormal normal. My naturopath said she thought it was the beginning of serotonin syndrome.

I did find a small bit of help with coping. To my great surprise because I am a total skeptic with alternative medicine an acupuncturist has been able to help me. Not to get better but to improve the pain and anxiety....it just doesn't last long enough. A new attack happens to me every Wednesday and Weekend and that wipes her work away. She recomended a tablespoon of coconut oil 2 x a day so I added that.

I was on the Biocidin for one week and saw no difference then was alternated to GI-Microb X and saw huge improvement for a week. Then alternated back to Biocidin and got sick again. My Naturopath switch me to taking 2 GI Micorb X in the morning and one Biocidin at night. and within three days of this switch I got hit with my big bad end of month attack. I've been trying to recover ever since.

I've finally seen the pattern....I get a really bad end of month (22, 23 kind of date) attack that rolls into the Wednesday's attack and the next weekend attack. The big bad attack always happens on the anniversary of my initial infection.

I don't think the herbs are working and my Naturopath agrees I need a stronger pharmaceutical. She is testing me for parasites. Her first time but my third stool test of this type.

I am going for nutritional counseling with an RN that has lots of training but it took months to get in to see her. I will finally see her next Friday. In the mean time I saw a lady my Acupuncturist wanted me to go to. She does kinesiology. Something I am not fully on board with. I wonder what her true nutrition knowledge is but I am taking different supplements she recommended.

Berbercap (Thorne) 3x a day
Cysteplus (Thorne) 1x day

L- Glutamine (Thorne) 3x a day 10 weeks

Ultra Flora (Metagenics) 2 x a day

chelated Magnesium 100 mg 3 x a day
Vit b 6 100mg 1 x a day

CalApatite Bone Builder Forte 1 x a day. I was taking caltrate 600 d 3x aday she said its garbage and had me stop taking it. I am concerned I will not be getting enough calcium but I figure I'm seeing a real nutritionist in a week so I can ask her opinion. I really want to be tested so I'm not just going by guess work on what I really need.

I know this stuff takes time so I can't comment yet on how effective it is.

I have contacted Best Doctors and have them collecting all my records for a second opinion and have a referral to a Infectious disease doctor in Boston. Don't have high hopes for anything anymore. I just want to stop living at this point. I really love my husband and children but this is no life, sick every single min of every single day. I know my gut being messed up is messing with my head but I am lost as how to fix it and I am beginning to believe I will never get better. If the appointments over the next couple weeks offer no help I will be totally lost. I feel that either this malabsorbtion will kill me slowly or the gut brain imbalance will.


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## LilyWillow

Its the middle of May and time for an update. I realized that I may be infected from a tick bite. I was bitten and had a bite site reaction. 4" circle rash then several months later had migrating circle rashes. I have also had little blister rashes that I misinterpreted as hives. My lyme illiterate doctor looked at the bite and said no lyme. Never tested me. Looked at the rashes and said I don't know, no treatment. I've also learned that the current "standard Lyme test has a 60% false negative rate. Thousands of people in the USA are told they do not have lyme when they are infected. It is becoming an epidemic.

I've just had the ImmunScience Lab lyme profile done.

The kinesiologist in my opinion is a waste of money. After my second appt with her where she emphatically stated I had no infections of any kind. She felt I had a mechanical issue and needed to be treated by a chiropractor. She works for a chiro....not to mention I was already in treatment two times a week with a different chiro unknown to her. The day after my appoint with her I had my 4th stool test come back positive for C-Diff. None of my previous doctors had bothered to test me for this oh so common infection because my symptoms didn't fit typical C-diff. I was treated with Flagyl and am much better now. Still not "normal" but that is because another test came back that I am infected with Bartonella. A co infection to Lyme. Looking at the symptoms of Bartonella I have had many of these chronically come and go. My tick bite was in 2005. http://www.gordonmedical.com/unravelling-complex-chronic-illness/bartonella-like-organisms-blo-consideration-signs-and-symptoms

I'm still waiting for Lyme test results. I'm hoping that treatment for Bartonella will resolve this all completely for me.

Also in my opinion Best Doctors is a total waste of money. They referred me to doctors who said they do not deal with my issues. Then their doctors second opinion came back to me after I had been diagnosed with C-diff and Bartonella. Their opinion was the gastro doctor was correct and all I had was IBS. A gastro who does not test for C-diff is incompetent in my opinion.

If you are considering Best Doctors your money would be better spent finding a good internist who will look and test more thoroughly for infections. I would never have been tested for tick bite co-infections if I had not asked and insisted on the ImmunoScience Lab testing. I had to do this trough a Naturopath.

I also had a stool test come back borderline for Citrobacter. Something I was never tested for previously. Stool tests only look for what your doctor tells them to look for.

I do believe, I do not have IBS at all. My symptoms were from a complex of multiple infection. If you feel the same about your symptoms keep fighting to find doctors who will find the causes. You can feel better, I do.


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