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May 7 12 10:33 AM

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Greetings,

I stumbled upon this site and read through it. It's actually moderated so it's a little more reliable and civil than the Curezone. Forgive me for the length. Feel free to skip to the questions at the bottom under current status. Thanks!

Summary

Pre-2002 - There is a history of digestive problems prior to my trip, but the symptoms were largely controlled once dair/gluten were eliminated from my diet.

2002 – Traveled to Central America. Fell ill from amebic dysentery. Symptoms were fever, malaise and severe diarrhea.

Treatment: Cipro and several rounds of Flagyl – severity of symptoms decreased but food sensitivities began. Flagyl made me feel pretty awful and didn't really help.

2003-2006 – continued to manage symptoms with various diets. The elimination of soy and dairy and later wheat seemed to help for a while but eventually symptoms would return. Symptoms were occasional diarrhea but mostly difficult to pass, mushy stools and frequency of defecation.

2007-2008 – began treatment with naturopath 1.

Treatment: Stool test showed candida and bacteria growth. Did a round of nyastaten, candida diet as well as supportive formulas: fiber, probiotics, herbs and vitamins. Stools returned to normal for about 3-5 months and then symptoms began to increase again.

2008-2009 – continued to treat symptoms by the elimination of foods. I had stuck to the diet free of dairy and soy with very little gluten. I went gluten free at the end of 2009 but symptoms continued to worsen regardless of what I ate.

2010-2011 – Symptoms severity began to rise again to the point that I was only eating basic foods (brown rice, chicken some greens).  Began treatment with naturopath 2.

Treatment: Stole test showed evidence of bacteria, low counts of probiotics and the presence of endiomax nana and blastocystis.

Herbs – Berberine, Black Walnut and Artemesia – very little impact on symptoms.
Other – psysilium husk, saccharomyces boulardii, l-glutamine, probiotics – seem to help with diarrhea so long as I avoid carbohydrates and sugars.

Drugs combinations attempted:
Date: 12/2010
Humatin (paromycin) 250mg 2 pills 3 x per day for 10 days
Iodoquinol 650mg 1 pill 3x per day for 20 days
Metagenics Canibactin BR 1 pill 3 x per day for 20 days
Cleared the E.nana, reduced numbers of Blasto, symptoms were reduced but not significantly

Date 2/2011
Secnidazole  400 mg (30 Capsules) 3 times a day
Diloxinide Furoate 500mg (30 Capsules) 3 times a day
Septrin DS (20 Capsules) 2 times a day

Symptoms improved for a period of time but over the coming months began to decline over the 8 weeks that followed. Stool test shows no reduction of blasto numbers.


5/2011 –  Allergy panel and basic blood work; it all came back normal.

7/1/2011 - End/colonoscopy performed. Besides very mild inflammation everything was normal. For some unknown reason after the laxative process helped. The GI doctor said this was common but didn’t know why.  The improvement was short lived. About 4 weeks after the colonoscopy symptoms began to recur. This was expected as it usually takes between 4 and 8 weeks after a treatment for the symptoms to return.

7/20/2011 - Biopsies and microscopic examination of tissues came back normal with, as the doctor put it “very, very mild” inflammation of the colon.

7/30/2011 - Obtained Rx of secondary protocol from Dr.Brody at the Center for Digestive Disease, but did not do the protocol because I wanted to speak with the infectious disease clinic.

9/2011 - Had an appointment with infectious disease clinic.

CT Scan - normal
O&P Test- (3 tests over 3 days with fixative) - results were negative for known pathogens, including Blasto.
IgA Test (celiac) - negative
HIV - negative

Since the O&P test came back negative there was no justification for the secondary protocol. I still have the medication but have not taken them.

10/2011 - Tested for CIBO at Mercy GI. Results were negative.

11/2011 - Began taking Thorne’s Mediclear plus. This provides additional relief. For a time sensitivity to fruit was reduced, but then returned after suddenly after about a month.  I began experimenting with the Selective Carbohydrate diet, but I didn’t see any real improvement from it. I am able to tolerate the yogurt however.

4/2012 - Attempted fecal transplant with naturopath (Dr.Mark Davis) in the U.S. under the assumption that my issues may be due to what I'm lacking rather than what i've got.  So far I haven't seen much improvement. I'm considering pursuing the infectious disease angle again. Dr.Davis suggested that I try the Metametrix testing, which seems to be highly regarded here.

Current Status: Still taking Apriso, Mediclear Plus, VSL #3, and Lomotil. Symptoms have improved some, but I’m still having trouble expanding my diet. If I stay to a very simple diet of eggs, chicken, and greens, avoid grains then I’m mostly normal.

 My parasite testing was done through Genova, who I didn't entirely trust. I let the ID doctors inability to confirm the infection convince me not to take the second line treatment from CDD (now I wish I had). My reasoning at the time was that I didn't want just throw antibiotics at my system willy nilly. I figured I'd try some other things before doing that. 

The second line treatment consists of: Nitazaxoanide, Secnidazole and Furazolidone. Nita and Sec didn't seem to have any extreme side effects, but Furzazolidone is supposed to be a known mutagen.

1. Is anyone up on the research about why Furzazolidone was banned from the U.S.? How dangerous is this drug really?

2. Has anyone tried (and had success) with the second line therapy. How was it? I've heard its somewhat harsh?

3. I ordered these drugs in August of 2011. As I stated, I did not take them at this time. They have an expiration date of 4/2012. This probably doesn't need to be asked, but are they still good? I'd prefer not to have to re-order the drugs all over again (but if I have to I will).

4. If and when I do attempt the second-line protocol, can you give me some suggestions to help the treatment take?

Thanks!

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linenup

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#5 [url]

May 8 12 2:25 AM

I think briboy has got it right , sounds like a case of e histolytica  - he and others got this bug out of them with Dr. Cahill.  

The second line treatment consists of: Nitazaxoanide, Secnidazole and Furazolidone. Nita and Sec didn't seem to have any extreme side effects, but Furzazolidone is supposed to be a known mutagen.

1. Is anyone up on the research about why Furzazolidone was banned from the U.S.? How dangerous is this drug really?

2. Has anyone tried (and had success) with the second line therapy. How was it? I've heard its somewhat harsh?

3. I ordered these drugs in August of 2011. As I stated, I did not take them at this time. They have an expiration date of 4/2012. This probably doesn't need to be asked, but are they still good? I'd prefer not to have to re-order the drugs all over again (but if I have to I will).

4. If and when I do attempt the second-line protocol, can you give me some suggestions to help the treatment take?

Thanks! Furaz is a nasty lumicidal in that it has many side-effects, CDD changed from this over to Diloxanide Furoate which I took bunches of with any problem.   The only issue is where to get it, I ordered from MagicPharma along with Nitazoxanide -  We think that the Nita is not all that great and attempts to contact the manufacturer several times were met with silence to check authenticity.    Nita from Medsmex is probably a better choice.  By the second line I suppose you are talking about Sec/Septra/Diloxanide?    This has less side effects, but I would think a better combo would be Nita/Septra/Dilox  -   Secnidazole is a derivative of Flagyl which has never shown great effectiveness (IMO) - I think Nita is a much better choice since it is less toxic.    I know a lot of people who complain of Flagyl side effects.    I would do some searching on expiration dates, my guess is that they lose a little effectiviness ... Please keep us posted on outcomes so we can all learn from the experience, so that we may all be better :) 

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#6 [url]

May 8 12 7:52 AM

I didn't. I got it via a DO who was open minded enough to order the drugs for me.
Who is Dr. Kaiser? I've heard mixed things about Cahill on Curezone, but then again, Curezone is full of mixed things. Did you see him, B? What was it like? Was it helpful?

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#7 [url]

May 8 12 8:56 AM

Thanks for the responses everyone.

I got the first protocol I from a paper I found on the Internet and convinced the naturopath I was seeing at the time to Rx it. As it turns out, it is from Dr.Kaiser's site:

Humatin (paromycin) 250mg 2 pills 3 x per day for 10 days
Iodoquinol 650mg 1 pill 3x per day for 20 days
Metagenics Canibactin BR 1 pill 3 x per day for 20 days

I'm thinking that maybe it should have been repeated in 15 days later or so rather than stopping at 20 days. Particular protocol was pretty harsh. It felt like I had chain mail in my guts. 

The CDD first line treatment, at least in 2011 was:

Secnidazole  400 mg (30 Capsules) 3 times a day
Diloxinide Furoate 500mg (30 Capsules) 3 times a day
Septrin DS (20 Capsules) 2 times a day

I did benefit from this protocol but only for about 8 weeks. After that symptoms returned.

The second line treatment they sent me is: Nitazaxoanide, Secnidazole and Furazolidone. Has CDD changed their second line treatment?


That was the one that I didn't do because I had concerns about Fura. I had let this ID doc talk me out of it because he coudn't confirm the blasto infection via an O&P test. I guess I wasn't surprised, but I wanted to rule out the IBD angle before using a more dangerous drug. Did they change the protocol to Nit/Sep/Dilox?

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#8 [url]

May 8 12 10:50 AM

Hi graymuse,

Yes, I did see Dr. Cahill.  My story is very similar to every other person that posts on PPTU and curezone.  But, luckily, I have a happy ending.  One day (as I promised lineup!) I'll detail the whole story on his site.

Essentially, I got sick in India 3.5 years ago.  I saw many, many doctors.  I took various stool tests.  I tried many, many protocols.  Still felt terrible.  All symptoms persisted.

It wasn't until I spent a week at the Cleveland Clinic, where I saw a GI doc, Infectious disease doc, Endocronologist and a Back/Spine (terrible right shoulder pain) doc that I decided it's finally time to see someone who knows their shit.  The Cleveland Clinic, supposedly one of the best institutions in the world, diagnosed me with IBS-D and GERD.  I sat there and talked to the GI doc and infectious disease doc (both Indian nonetheless!) and they were convinced that based on all the meds I'd taken, there was no way a parasite could still be living in me.

That Thursday of my week at the Cleveland Clinic, I made the decision to fly straight to NYC and see Dr. Cahill on Monday.  As I've told others, Dr. Cahill is straight to the point.  We've actually since developed a pretty good relationship since my initial visit.  But when I first visited him, I knew he was straight to the point, so I didn't give him a laundry list of problems, I just told him my main issues and gave him a print-out of all the medications I had taken.  He did a sigmoidoscopy and took a sample from the inner lining of my colon.  He cultured it thereafter and was able to give me the results the next day. 

Dr. Cahill also took a blood test for CBC and metabolic testing.  Certain parasites (in my case) eat your red blood cells, so the blood testing is equally as important as the stool testing when looking at the full picture.  It was also interesting to see my metabolic test results as certain nutritional essentials were quite depleted. 

I called back the next day and he diagnosed me w/ Entamoeba Histolytica.  The amoeba was present in his sigmoidoscopy findings w/ 4+ pus found around the cell.  He also found Charcot-lyden crystals at 3+ which are a tell tale sign of an amoeba.  My right should pain was being caused from the amoeba effecting my liver.  3.5 years w/ this bad boy.

As I've said, Dr. Cahill is very good at finding things.  Given that I had a very invasive form of EH, I didn't necessarily agree w/ his treatment protocol and followed a protocol (very similar) that has been written in many studies and books on the eradication of EH.

I finished the medication on February 22nd.  It's not a quick fix although some things change immediately.  My terrible right shoulder pain was completely gone.  My terrible sinus issues I had for 3.5 years (and even got unnecessary surgery!) were completely gone.  But, as Dr. Cahill will tell you, it takes time to recover from a parasite, just like any injury.  I've spoken to many others and it's a minimum of 3-6 months.  Most likely a year before feeling 100%.  I'm 2.5 months removed and I'm never tired anymore, work out hard at the gym all the time, have tons of energy, no sinus issues, no back pain, stools are back to normal for the most part.  Slowly but surely, getting back to normal.  This is obviously important as everyone wants to be immediately cured after taking these protocols.

Your symptoms point to EH but you never know.  Dr. Cahill has found Giarda, EH and many other parasitic infections in people.  I asked about your protocol from Dr. Kaiser b/c I did something similar when I was trying everything to get rid of the bug.  The Iodoquinol also gave me a crazy reaction but now that I know I had EH, it was b/c the Iodoquinol was killing off the bugs in my intestinal lumen.  The only problem is, it wasn't strong enough to completely eradicate them and they recolonized and came back in more force.

I think you need to first get diagnosed.  If it's EH, you'll see that your Humatin (paromomycin) prescription was not enough to kill off invasive EH.  Your reactions should be awful as these bad boys are dying off inside of you.

The bottom line:  go see Dr. Cahill.  I can only speak for myself in saying it's the best decision I ever made.  He gave me my life back and I am forever grateful.  Given everything you've been through, it really can't hurt to go see an expert on the matter.  Hopefully he can finally give you an answer too.

I'm happy to discuss or answer any questions you have after you've seen him and received a diagnosis.

Cheers,
Brian

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#9 [url]

May 8 12 11:02 AM

One other thing to note, unlike other who have seen Dr. Cahill, I went back to see him a second time 6 weeks after I finished the meds. 

I needed validation that I fully eradicated the bug and indeed I got it.  It was a huge relief.  What was also interesting is that the first time I saw Dr. Cahill and he did the sigmoidoscopy, before even looking at the findings under a scope, he told me he suspected something was wrong b/c there was a lot of blood in my colon.  When I went back and he performed the procedure, he said it looked much better then last time and there was no blood.

Cheers,
Brian

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#10 [url]

May 8 12 11:29 AM

Brian. Thanks for the lengthy response and you give an excellent endorsement. Good to know his style is straight to the point. That'll make things easier. What'd read about him was that he had some what of a brusk bed side manner, but you can't believe everything you read on the Internet. It sounds like he might be able to get to the bottom of my problem (no pun intended) which has been my main source of frustration. My failed attempts to treat blasto with limited medical supervision felt like I was shooting in the dark. If was going to subject myself to the risks posted by these drugs I wanted to maximize my chances of success and minimize my risk of exposure; hence why I didn't do the second line protocol from CDD. I'm patient and I'm certain I can heal my gut if I could just get clear of the bugs! I'd be great to feel 100%, but if it takes time then so be it. I'm willing to do the work I just need a little more resources.

Couple of questions:
What book did you use to alter the protocol Cahill suggested and what prompted you to go for that protocol over what Cahill suggested?

Do you think the Metatrix testing is worth the money at this point or should I just save my dollars for a visit to Dr.C in New York?

Many Thanks, Friends.

Greymuse

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#11 [url]

May 8 12 12:49 PM

Hi Greymuse,

There's many studies from the CDC, pharmaceutical companies, etc. that recommend treatments for invasive EH vs. non-invasive EH.  Google it.  It's a tissue drug followed by a luminal drug, in my case tinidazole followed by paramomycin.     

Dr. Cahill even says that his protocol (paromomycin and doxy) eradicates the bug 85% of the time but it's possible that you'll need something else.  I didn't want to take any chances given that I've had this bug inside of me for 3.5 years, so I opted for the invasive treatment.  If you have EH, I'm happy to explain in more detail but getting diagnosed is key.

Personally, I don't think Metametrix is worth the money.  Lineup may disagree but I ended up doing it before I went to Cahill and it didn't find EH. 

People I've spoken with,  who were also diagnosed w/ EH by Cahill, did Metametrix and it came back with Blasto or PPTU.  Never once did EH show up on the test -- even when 3 stool samples were submitted on different days. 

Once such person I spoke to, who had blasto show up on Metametrix, did all protocols from the CDD for Blasto and he never felt better.  It wasn't until he was diagnosed w/ EH, took the meds and waited a few months that he finally got relief.  I can't say for sure, but it seems like he never really had blasto.  Dr. Cahill doesn't believe blasto is a pathogen, which would make sense in this particular case, that blasto wasn't the problem but EH.

New York is a nice place in the summer.  Go get tested :)

Cheers,
Brian

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#12 [url]

May 8 12 12:51 PM

I should also note, I did take the doxy w/ the paramomycin per Dr. Cahill's recommendation.  I also took an antibiotic called quinacrine for 5 days thereafter for cryptic giardia, just to ensure I had all my basis covered.

Cheers,
Brian

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#13 [url]

May 8 12 12:53 PM

Brian,

Many thanks for your thoughtful, civil and informative response. I made an appointment after my school semester gets out. I'll hit you back after I've seen the doc. Thanks again.

Cheers,

Greymuse

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linenup

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#14 [url]

May 8 12 3:24 PM

Thanks briboy for the informative posts, I will put your post under the success stories which we need more of  -  I do not know what to think about MM testing -  as far as I am concerned, it is the best out there but there may be flaws.   I have seen some repeat testing that is different than the first, maybe this is an issue of getting some flaws worked out since this is new technology?  




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#15 [url]

May 8 12 11:55 PM

Hi Guys,
Found this very interesting as i have been sufferer of Blasocystis since October 2006.
Are you reffering to CDD ( Center of Digestive Diseases in Sydney Australia) if so im an Australian girl, have tried the treatment and i think it is the biggest load of bull in the whole time ive had blasto and have been treated with a wide variety or drugs to natropathic now im into accupunture.... cutting a long story short - is there a cure for this!!!!!!

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linenup

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#16 [url]

May 9 12 8:42 PM

ozzie:   Yes referring to Center of Digestive Diseases...  have you looked at other treatment protocols as listed on badbugs?   I did acupuncture which did not do it for me, although I think it can be helpful for getting energy to the intestinal tract  I use several points PC6, LI4, LIV3, SP4, ST25, ST36, CV4, CV6



There is a report of using chinese herbs that eradicated and I suppose this was done with acupuncture http://curezone.com/forums/fm.asp?i=1156080


Al Stone (California) can formulate this for you but you would have to pressure him on the ya dan zi which is considered toxic.   


There is an herbal formulator in Australia for blasto as well, if interested I would have to dig out the name. 

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#17 [url]

May 9 12 11:00 PM

@ lineup: i did some research into the other treatments and with further talks to people have found them to be quite damaging to the body.
Im at the end of wondering what to do - i like most people want to take one tablet and for it to be gone and to feel normal again!!!
I got it when i turned 18 - about to turn 24 so i have not much luck since then. has stopped alot of things in my life. My biggest issue at present is i want to have a baby and i dont want this bug in me if it affects my baby.
one bizarre thing i have found is my symptons flare up in late May /June - each year since 2009.
Not sure why or how,,,, but it does each year. It is coming up to be winter on the 1st of June here in Australia.
One thing i want to get myself tested for is Hypoalbuminemia.
I have tried to Natropath thing and got """rid"""" of dysbiosis and i felt crappy again after like 3 weeks!!!
Like most spending a lot of money and getting nothing good out of this!!!!!
I have found my most troubling problem to be is anxiety i get from this blasto! is terrible!
not sure what the GPs, INtestinal Specialists, INfectious Disease doctors are like over there but im faced with a friggen nightmare here - no one will help!!!!!!! or the main thing research it if they know jack about it!

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#19 [url]

May 10 12 6:15 AM

Question about dr. cahill, does he look for other parasites too or is he just familiar with those he has researched?
I have diarrhea but also bloating and have not spent time out of country. Although my symptoms began the week after I was in the hospital so I suspect I picked up my infection at that time. 

Also briboy what were your costs and did insurance cover any? 

thanks.

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#20 [url]

May 10 12 8:13 AM

iloveisabelle,

When I called Cahill's office they said they accepted cash or check and would give you a form that you could use to bill your own insurance. They don't do insurance billing. Whether or not you are covered depends on the plan. You'll have to call and ask. I don't know what the exact cost of a visit and labs is. I'll find out.

In the mean time, have you been tested for SIBO? If you were in the hospital its possible your symptoms are due to a dose of c. diffe?

Cheers,

Greymuse

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