The Undetectable Infection

[Elph68]

@Elph68 this is just what I need, the problem is I am allergic to rice, I wonder if we can use something else. This is not CFS related I have being made sick by rice since I was 15.

Hi Inester,

I make cauliflower rice .... just stick it in a foodprocessor and chop it up .... fry it in a frypan. Add some broccoli too if you wish.

I haven't had rice for a long time.

 

[Elph68]

Excellent study. Picked up some yakult today. My boy loved it.
My only worry is the sugar level in it, but l guess they need to ensure the good fighters are well fed!

Hey Mark,

there is a low sugar version.

Cheers.

 

[Mark37]

Hi Darren and all,

Thanks for your recent postings. I like Pete Evans too - l'm sure you've also tried his nutritious and very tasty version of kfc chicken ). My vice is wine!
Found the low sugar yakult too, thanks.
Are you getting your xylotol products from iherb?

Just into my third week of rectally injected kefir grains blended with neem, chamomile, calendula, red clover teas, as per previous link to Doms kefir site. His wife mentioned other men have had success treating prostatitis this way. I've missed a few nights but it's been a HUGE improvement. I will continue this as this has been the single best therapy for reducing prostate inflammation.

I've read kefir can kill ecoli, candida, reduce tumor size in rodents and so much more. Although my gp appeared bemused when l mentioned this treatment...

3g of taurine before bed is enabling deeper restful sleep. The best of anything I've tried for sleep since this began. I started on a lower dose and first experienced some weird symptoms as l titrated up. It's affordable, natural and good for a range of ailments. It appears safe for my son and we'll be starting him now I've done the crash test dummy work.

I'm also producing water kefir grains again to eat and mix into my families milk kefir shakes. Keep crowding the bastardos out or at least taxing them for a change and disrupt their progress.

My gp is testing us for pyroluria. There may well be something to this, but l'm in no doubt, without infection we wouldn't be here now.

I'm looking at gains and improvement in terms of months. I'm much better, stronger and happier than where l was 6 months ago and the proceeding years since this began. I expect flares, this is one resistant bug(s?), they'll cause pain, fatigue and issues as they're discovered and killed but it'll get easier and better over time.

Peace,
Mark

 

[drob31]

Have you seen Dr. Lam's page about Stealth Infections?

http://www.drlam.com/blog/stealth-infection-and-adrenal-fatigue-syndrome/4714/

 

[Elph68]

Hi Darren and all,

Thanks for your recent postings. I like Pete Evans too - l'm sure you've also tried his nutritious and very tasty version of kfc chicken ). My vice is wine!
Found the low sugar yakult too, thanks.
Are you getting your xylotol products from iherb?

Just into my third week of rectally injected kefir grains blended with neem, chamomile, calendula, red clover teas, as per previous link to Doms kefir site. His wife mentioned other men have had success treating prostatitis this way. I've missed a few nights but it's been a HUGE improvement. I will continue this as this has been the single best therapy for reducing prostate inflammation.

I've read kefir can kill ecoli, candida, reduce tumor size in rodents and so much more. Although my gp appeared bemused when l mentioned this treatment...

3g of taurine before bed is enabling deeper restful sleep. The best of anything I've tried for sleep since this began. I started on a lower dose and first experienced some weird symptoms as l titrated up. It's affordable, natural and good for a range of ailments. It appears safe for my son and we'll be starting him now I've done the crash test dummy work.

I'm also producing water kefir grains again to eat and mix into my families milk kefir shakes. Keep crowding the bastardos out or at least taxing them for a change and disrupt their progress.

My gp is testing us for pyroluria. There may well be something to this, but l'm in no doubt, without infection we wouldn't be here now.

I'm looking at gains and improvement in terms of months. I'm much better, stronger and happier than where l was 6 months ago and the proceeding years since this began. I expect flares, this is one resistant bug(s?), they'll cause pain, fatigue and issues as they're discovered and killed but it'll get easier and better over time.

Peace,
Mark

Hi Mark,

I get xylitol products from my local health food shop.

Kefir grains have not affected/improved my prostate pain. I had prostate pain, burning eyes and sore/geographic tongue for nearly 3 years before i got IBS, and i physically put these bacteria up my rectum which caused the IBS. There is a line of thinking that IBS causes prostatitis, the bacteria toxins interact with the prostate via the colon .... this is not my case. I had a new partner, her fluids burnt my genitals, eyes and mouth, turned everything red ..... 5 days later I was in an STD clinic being told my prostate and urethra was inflamed and I had been 'hit by something' but they didn't know what, subsequently treated with 4 weeks doxycyclene and cured. Then it happened again a couple of months later during unprotected sex, I was treated with 4 weeks of azithromycin and cured. Then 3 months later it happened again, but they wouldn't treat me this time. And then my battle starts. I believe my prostate is full of these bacteria that are shaped like spiny pineapples which get caught up in the prostate membranes, producing toxins which damage cells along with the damage caused by the spines (LTA). The biofilms are exactly the same as tartar on teeth. Tartar on teeth causes tooth decay and gum disease, it does the same in the prostate ...... The prostate is full of sugar, a feast for biofilm forming bacteria. Non bacterial prostatitis is BS ....

My now ex wife and I tries to get back together, she gets vaginitis after being with me, so she gets treated with augmentin duo forte, and it goes away, we use protection and then a few months later protection slips off she starts all over again, treated and goes away, a few weeks later same thing, protection slips off, vaginitis again, no more treatment.... several months later she develops a kidney infection, pathogen not isolated but 1 month of keflex clears everything. At least now she is good. Marriage falls apart, divorce .... We had herpes pcr and antibodies test .... nothing. We had mycoplasma and ureoplasma pcr test, .... nothing. Every single STD test done ... nothing. Same with my GF.

The undetectable infection is about simple sugars and biofilms, and the toxins that they produce.

I am a research social scientist and bacteria colonies act like people colonies. Take a group of people and move them to another area and they will act in the same way as where they come from. Bacteria are the same .... Take bacteria off the teeth and put them in a sugary environment, like the vagina, the prostate or the gut and you have tartar, release of organic acids and toxins, DNA damage at the cellular level and inflammation ....

I will state it here also, these are cancer causing bacteria and their virulence varies between the strains, that is why they don't affect everybody in the same way. I believe it is a small group of different bacteria acting in the same way .... that is why it is undetectable.

I believe I am lucky in 1 respect, these bacteria kick the living hell out of me. That is how I know for certain what is going on.

The doctors have it wrong.

 

[Elph68]

Have you seen Dr. Lam's page about Stealth Infections?

http://www.drlam.com/blog/stealth-infection-and-adrenal-fatigue-syndrome/4714/

Interesting read ... I reckon he is on the right track at least.

 

[Mark37]

Hi Darren,

I suspect some in the medical community are aware of this too - super/highly resistant bugs causing absolute hell for certain people, but impossible to identify/isolate or detected as "normal".

I too have been tested, three times for "all" stds, mycoplasma, ureaplasma, hsv1+2. All clear. My partner who fortunately suffers no symptoms was also tested - all clear. The prostatitis, lower back ache, muscle twitching, nerve tingling, brain fog, memory/word selection problems and cf were all also written off as me being hypo/anxious/depressed. I sure as shit were none of those things prior!
I have Ebv and cmv antibodies. Perhaps these reactive when bad bacteria gets the upper hand.

After the countless blogs and posts i've read, most cases are bacterial/fungal etc.

Consider trying the tea with the grains. I notice tingling and twitching afterwards, particularly legs/testes, the kind that normally occurs when l ingest something these bastardos really dislike.

Neem is the important tea to include. It'll help reduce inflammation and has
excellent anti viral/ bacterial properties and is not being diluted through the body before arriving where we want it.

Once l run out of milk kefir grains l will use double the water kefir grains and continue. This is a war.

I really wish you improvement in this area, picture those nasty little prickly pineapples being saturated in neem brew and dying, whilst the kefir recolonises and sets about the healing. Your immune system will be encouraged by this. These bugs are real, definitely resistant.... but not invincible. We can win this fight. Some of us just take longer than we originally hoped.

You're posts inspire many people Darren.

 

[drob31]

What is the current consensus on antibiotics? Minocycline/Azithromycin?

 

[Elph68]

What is the current consensus on antibiotics? Minocycline/Azithromycin?

Hi Drob,

personally I would not use azithromycin unless you have never used it before .... it is too broad spectrum and the gram + bacteria are able to develop a resistance to it. I have a study here that shows 7 days is all they need to develop a resistance. Clarithromycin or erythromycin would be better..... And needs to be relatively long term and there needs to be some form of bacterial replacement to the gut of good guys.

Do not use ciprofloxican as they can develop resistance to this drug while you are taking it. I personally shudder whenever I see somebody post on here that they are taking Cipro, unless it is in combination with one or two others.

 

[chuck]

Hello @Elph68, what would you recommend for someone who has the following BioScreen results (attached).

My strep overgrowth is S. Parasanguinis, and S. Salivarus, and Enterococcus is E. Faecalis.

I also have severe IBS, and prostatitis. My symptoms began following a parasite infection in Indonesia in 2012. I've been treated with antibiotics, anti-fungals, and even FMT. But the treatment protocols prescribed to me have been silo'd. I think a coordinated approach is needed to target these terrible bugs.

I'd also like to thank you for your posts and information. Your posting has given me the courage to want to share my experiences on this forum.

 

[Elph68]

Hello @Elph68, what would you recommend for someone who has the following BioScreen results (attached).

My strep overgrowth is S. Parasanguinis, and S. Salivarus, and Enterococcus is E. Faecalis.

I also have severe IBS, and prostatitis. My symptoms began following a parasite infection in Indonesia in 2012. I've been treated with antibiotics, anti-fungals, and even FMT. But the treatment protocols prescribed to me have been silo'd. I think a coordinated approach is needed to target these terrible bugs.

I'd also like to thank you for your posts and information. Your posting has given me the courage to want to share my experiences on this forum.

Hi Chuck,

Great you are here ....

This bioscreen result is the splitting image of my GF and my tests.

Just out of curiosity, how are your iron levels??

Cheers.

 

[chuck]

Thank you.

Not sure what my iron levels are to be honest. Most of my blood work continues to come back "normal" so the doctors don't know what to do, and neither do I.

But, judging by my symptoms and my BioScreen results, things are far from normal.

 

[Elph68]

Thank you.

Not sure what my iron levels are to be honest. Most of my blood work continues to come back "normal" so the doctors don't know what to do, and neither do I.

But, judging by my symptoms and my BioScreen results, things are far from normal.

You mention that you had FMT .... Where was that done? What drugs did they use?

Would you mind listing all your symptoms? PM me if you like.

Cheers.

 

[chuck]

They used Metronidazole and Vancomycin, and had it done at CDD in Sydney. 10 days in Feb 2014. Earlier, I'd taken Rifaximin and Vancomycin in September 2013. These BioScreen results are post-FMT.

 

[Elph68]

They used Metronidazole and Vancomycin, and had it done at CDD in Sydney. 10 days in Feb 2014. Earlier, I'd taken Rifaximin and Vancomycin in September 2013. These BioScreen results are post-FMT.

When I went to CDD I had the bioscreen results and I told them what I wanted removed.

They had me on ciprofloxican, vancomycin and augmenting duo forte for a month .... Took all the strep out, all the lactobacillus and biffidobacterium was taken out and took my e-coli back to normal .... The enterococcus faecalis increased.

The funny thing then was even though my brain fog, anxiety and cognitive function normalised, I was left with terrible muscle pain, sore eyes, nose, mouth, asthma symptoms and a severe lack of stamina, and the usual sleep disturbances and the prostate issues.

If the abx doesn't remove the strep parasanguinis and you don't follow a strict carb limited diet, it will always come back. The CDD did not recognise these strep species as a problem .... The exact words I got was 'if these strep species cause a problem in your gut, I will eat my hat' ..... I should send them a knife and fork.

Strep parasanguinis is like the glue that holds all the other bacteria together pushing out more beneficial bacteria.

If you have had prostatitis for more than 3 months, it is near impossible to get them out of the prostate .... Try to get tartar off your teeth, it is a hard rock .... That is what my research tells me that bacteria do in the prostate and oral antibiotics have no chance of breaking in and getting them out .....

This is the statement that got me treatment .....

....... If streptococcus parasanguinis and other strep species including lactobacillus form colonies of mixed bacteria on my teeth in the presence of simple sugars which results in tooth decay and gum disease, why is it any different if they form in the mouth, throat, lymphatic system, prostate, vagina or gut??? The answer was .... We don't used abx to clean our teeth.

..... So how do I get a toothbrush in my prostate, or in my gut? I got my abx ......

I am now still improving, and I am on an ongoing prophylactic treatment indefinitely.

The final answer, I have 2 treatment options I have been working on, but I have to go overseas for anything up to 2 months.

I am just figuring out wether direct inject abx into the prostate or phage therapy is the answer.

Cheers

 

[chuck]

Sounds so familiar.

At CDD I was told that there's nothing pathogenic about these species of strep because they're 'normal flora' and couldn't be causing me issues.

I'm going to be discussing options with my GP about a combined antibiotic protocol that I can take with the following in mind:
- Effectiveness against S. Parasanguinis group
- Effectiveness against E. Faecalis, E. Coli
- Incorporates anti-fungal medication during antibiotic therapy (e.g. Nystatin 2 tablets, 3/daily, pulsed fluconazole/itraconazole, due to the fact they stay within the body for several days/can be detrimental to liver function)
- Ability for medications to penetrate into prostate tissue and lymphatic system
- Lowest risk of C.Diff /antibiotic associated diarrhea/colitis - this is a tricky one but something I have to weight up since I've had FMT for severe 'dysbiosis' and was worse off according to BioScreen after my FMT.
- Taken for sufficient duration to treat infections fully and build antibiotic resistance (e.g. 1 week of macrolides increases S. Viridans antibiotic-resistance) so maybe considering at least a 6-8 week treatment.

Sigh...

 

[chuck]

For anyone interested, this is a somewhat longer version of my history. I've copied and pasted from another 'thread' I mistakenly started, intending to post in this thread. My apologies for the double up!

Hello everyone, I am new here, and it is through reading @Elph68's posts that I have decided to take the plunge and post here.

I should first begin with - I don't know if I have CFS because I've never been tested for it, or diagnosed for it. I can relate to having no energy and disrupted sleeping patterns. And, I do have knowledge of is the 'undetectable infection'. Here's my story, told chronologically (apologies for TMI, and/or jokes (they're my coping mechanism, so feel free to have a giggle), any mistakes or assumptions about illness):

January 2012 (24 years old) - Food poisoning overseas, and then I made what felt like a full recovery. For context, prior to food poisoning, I never really had lasting bowel or digestive issues. For the most part, I went once a day, and this part of my life was easy. Not only did I tolerate all foods, I enjoyed them. There wasn't a thing I didn't eat, and only if I disrespected my body did I have any issues (e.g. the one time I ate 750g of blue cheese in 2006) and didn't feel quite right for a week. Anyway, The day I got sick (January 22, 2012), I remember eating bacon and eggs on toast for breakfast and having a watermelon juice. About an hour later, I felt lightheaded, then dizzy. I felt hypersensitive to my surroundings for four hours, like I'd been drugged. Then, it came. Violent diarrhoea. It hurt. For hours. I remember lying on the hotel room floor crying for my mother. And seemingly as quickly as it came, it went away. Within a couple of days, I was fine; sore from visiting the bathroom over 100 times in 48 hours, but otherwise fine.


March '12: I was back home in Australia, and I developed two massive pimples on my back. The doctor gave me antibiotics.

April '12: I started having adverse reactions to alcohol. I went out with friends one night, had a few (okay, like 15-20) beers and didn't have a good day the next day (violent, uncontrollable D). I thought, 'Fair enough, that's normal. You're 25 now and it makes sense not to be able to drink as much as you get older'. I did nothing about it.

The next few months passed, with alternating D and I was again on ABs to treat these pimples or boils that came back on my back. I also developed this weird bald spot on my chin in my beard. I have the densest facial hair of anyone I know (in person), so this was annoying and visible. The GP gave me steroid cream for it. It did nothing.

In July '12, I started having pain in the lower left side of my abdomen after I ate, I'd start getting intermittent diarrhoea with loose stalls. They were rarely watery, and there wasn't blood. I started passing mucus clouds and strings in my stool. I thought it was weird, but didn't really know what to do about it. One day while sitting at my desk at work, I felt my stomach expanding. It hurt. It expanded so much that a button on my shirt was clinging on for dear life. I've always been fond of slim fit shirts, but this was not normal. I left work and went home in a panic. I remember having to piss a lot at that time. So much, like all the time. But, the fact that I had grown to look like I was in my third trimester occupied my thoughts more than my urinary symptoms.

August '12 came around, and I remember having a milk-based coffee and gagging at the taste of milk in my mouth. It was disgusting. I was out for dinner one evening, and after having a glass of wine my stomach grew back to being huge like I was a pregnant woman carrying twins. I remember driving in the car back home and I felt this uncontrollable urge to use the bathroom, but I didn't have to go. I spent the night lying in pain on my side, bewildered at what was happening inside me.

I got worse, I tried milk again, and that wasn't a good idea, so I cut it out my diet completely. The mucus clouds worsened and would happen whether I had to pass stool or urine, and then diarrhoea came on. Watery diarrhoea everyday. I couldn't stop it, and when I had to use the bathroom the need was immediate. I started having difficulty urinating. It was always accompanied by a dull, abdominal pain, it lasted up to an hour after urination, sometimes longer. I had some urine tests done - results showed everything as being normal.

Around September '12, I presented to the doctor again having lost something like 10 kilos in as many days, and with uncontrollable, watery diarrhoea (still no blood). The doctor put me on metronidazole (400mg tablets), and they stopped me from having diarrhoea. I also saw a gastroenterologist for the first time. He immediately said, 'We need to do a colonoscopy'. So I did. Now, here's the strangest thing. Remember the bald spot on my beard? It was about the size of an Australian 10c coin, and overnight (after doing the laxative preparation for the procedure) all the hair in that spot grew back. Who'd have thought there was any correlation there?!

The colonoscopy revealed proctitis and they put me on Colifoam. I also had this strange, LUQ abdominal pain under my ribs from time to time. Like this sharp, stabbing pain. So they did a gastroscopy next. The doctor said I had a sliding hiatus hernia, and then made me take PPIs. I started with Pariet (20mg once a day). The mucus in my stool stopped, and I felt like I had some semblance of control back if I stuck to eating steamed vegetables and homemade chicken soup. It was a boring diet, and for someone who had been able to eat whatever they liked previously, it was difficult to stick to, but feeling sick sucks so I did it. Around the same time, I had hydrogen breath tests done which ruled out SIBO and diagnosed the mildest of fructose intolerances. I was right on the borderline. But I already knew that. I loved eating mangoes growing up, and if I ate too many mangoes, I got an upset stomach. Too much of anything can be a bad thing, so that makes sense.

I continued on my boring diet, and alternated with this growing list of weird symptoms but no clear diagnosis. Frequent urination, stool urgency, a wet feeling on my groin like I'd leaked urine, but I hadn't. I started having the shakes in my sleep after deep exhalation. My girlfriend noticed it and would ask if I felt alright, and I didn't know. I got twitches and weird feelings throughout my legs and feet.

November was ending and summer was starting in the Antipodes. I was at a friend's BBQ and I was in such high spirits, I decided to celebrate with some. Well, beer, not spirits. I had one beer. It was November 22, 2012. I had one beer. That night, at 4am I woke up gagging on something that was the most disgusting, acidic, burning, revolting business I'd ever tasted. It was burning my throat, my mouth, lips, tongue, teeth. It all burned and burned. The lumps on the back of my tongue had grown huge, and everything looked red and inflamed.

The acidic taste in my mouth stayed, and my tongue developed this thick whitish coating on it. I had to scrape it off. The doctor upped my PPIs. The strangest thing was that I'd never had reflux before in my life. I could hang upside down all day and I wouldn't get reflux. I'd already cut out the "trigger foods" for common GERD - I didn't have coffee, chocolate, tomatoes, etc. And now I was taking between 40-80mg of Nexium a day. It sucked. My mouth felt swollen inside, my tongue hurt. I still had bowel problems but they had taken second fiddle to what was happening much further up.

January 2013 - I took two rounds of Bactrim DS because the latest urine test results highlighted at a mild inflammation. Those drugs did nothing. In February, I had an oesophageal manometry. They suck. 24 hours of a tube stuck up your nose and into your oesophagus with this pack you have to wear on you, while the doctor says, 'Hey buddy, try and live normally..' Nice one, doc.

The strange thing here is that they revealed some reflux - but not much more than what is considered normal. I had something like 17% over 24 hours, but 15% is considered normal. The other thing is that I never had heartburn, but I had the sorest of throats. I investigated LPR. I elevated my bed. I talked to my parents about one day needing surgery if the LPR got out of hand. I changed doctors after my current specialist said he didn't know what was going on.

The new one heard this story of mine in February 2013, and said, 'You've had Giardia, and you still have it.' He didn't run any tests, but he gave me Tinidazole to kill the parasite. He gave me Nilstat Antifungal solution and amphotericin lozenges. My mouth didn't burn anymore. Amazing! In March, everything came back. I was cursing the world because I thought I was over the worst of my issues. The specialist put me on SOMAC after he conducted a gastroscopy, my second in five months. He said, 'Some patients respond better to some PPIs than others.' I was taking 80mg a day and they fucking sucked. I couldn't digest food properly and my mouth tasted like rubbish and I got so down.

I started reading lots online about all the kinds of things I could have contracted. My girlfriend's dad is a GP, so he wrote a script for fluconazole. I took it for a week. Boy, I'd never felt better. I FELT SO GOOD! I felt cured. It was like before I took that fateful trip to Indonesia. I could eat whatever I wanted, it was THE BEST. Then, in May, everything came back again. My urinary, gastrointestinal and mouth symptoms all returned, with increasing severity. I was sent to see a urologist because this issue was bothering me the most. He performed a rigid cystoscopy and said everything was normal. He did a KUB ultrasound, all normal. I felt hopeless.

Around this time, I also weaned myself off PPIs. They made me feel like shit, so I stopped taking them. That was a bad idea. Two days after stopping cold turkey, I had heartburn while driving to work. I had to pull over because it felt like a heart attack. So, I transitioned off them. I went from 80mg, to 60, 40, 30, 20, 10, 5. I split the pills and stopped taking them.

In July '13, I got a cold. Nothing abnormal. But after recovering from the cold, everything else got worse. I had the worst motion sickness and fecal urgency. I had accidents in public, too many of them. Everything got worse and I became housebound. It was like having food poisoning all over again.

I didn't know what to do and I didn't go to a work a single day for 2 or 3 months. It was difficult to explain at first because I had missed work periodically for appointments, or because I had flare ups, but this was something else entirely. It wasn't functional, and I wasn't in control. I had two tests done, a Comprehensive Digestive Stool Analysis (it showed some pretty whack dysbiosis going on and the presence of yeasts in the stool), and a stool microbial analysis from BioScreen. This showed that I had an overgrowth of streptococcus, no yeasts detected in this sample, and an undergrowth of anything good and an overgrowth of everything "bad".

I found this website called Bad Bugs, and before receiving the results of those two tests I'd pinned my hopes on blastocystis hominis or d fragilis, but it turns out I didn't have either.

This is when I presented to CDD in Sydney. I had to travel from my home in Melbourne, and was Imodium'd up so I wouldn't shit myself, and didn't eat all day because the pain wasn't bearable. My mum came with me, and I met one of the doctors there. He put me on Rifaximin and Vancomycin. They didn't do much. Maybe helped the bloating, and gave me some control back, but I wasn't healed. The doctor asked me to come back to Sydney to have a colonoscopy and gastroscopy done to be certain of what was happening. I went up to Sydney in November 2013. CDD takes stool samples while you're under so they can get it tested in the lab. Whatever they tested for, came back negative. I had raised white blood cell count in the stool, but I can't remember anything else significant (I'll double check this one). I also had no lactase production. The doctor said whatever injury had been ongoing had wiped out my body's production of this. It wasn't an issue as I'd eliminated dairy products a long time ago.

He said that there was the tiniest site of active inflammation in the colon, so he wanted to treat it. The pathology report said it wasn't overly significant and could have been the result of the bowel preparation, but the doctor trialled me on 10 days of Prednisone. 5 days at 50mg, then 5 at 25mg. It didn't help my bowel symptoms, I just felt "wired" all the time, like I'd had too much coffee or something. Oh, around this time I also had a test for leaky gut. I have it, but don't know how to treat it.

Then, at the start of 2014, they raised FMT with me. I did 10 days. Following FMT, I didn't have as much urgency, my urine symptoms vanished initially and my body shakes went away overnight. Then they came back. On Day 7 of the FMTs, I had violent diarrhoea and became disheartened but got through the rest of the process fine.

Later in 2014, my urine symptoms were pretty bad, and my bowel symptoms weren't so good either. I forgot to mention that I've had a couple of rigid cystoscopies and seen some urologists as well and had countless urinary tract tests done - most of them invasive, and have come out with no diagnosis.

And so, in June 2014, I did my second BioScreen (AFTER FMT). I had an overgrowth of Strep Parasanguinis, E. Faecalis, Bifidobaterium, and yeah. FMT hadn't corrected everything for me. My guess is that my issues are the result of a few compounding factors - bacterial, fungal and then the anxiety of chronic illness affecting my response to everything.

I'm going to be asking my doctor for a way to treat Streptococcus/Enterococcous/Fungus in the gut, because I think there's a strong possibility that they affect my gut, my prostate, and lymphatic system. I also think the drugs I've been on haven't been taken for long enough to successfully treat them.

Anyway, thanks for reading and if you have any questions, please ask.

 

[Elph68]

Sounds so familiar.

At CDD I was told that there's nothing pathogenic about these species of strep because they're 'normal flora' and couldn't be causing me issues.

I'm going to be discussing options with my GP about a combined antibiotic protocol that I can take with the following in mind:
- Effectiveness against S. Parasanguinis group
- Effectiveness against E. Faecalis, E. Coli
- Incorporates anti-fungal medication during antibiotic therapy (e.g. Nystatin 2 tablets, 3/daily, pulsed fluconazole/itraconazole, due to the fact they stay within the body for several days/can be detrimental to liver function)
- Ability for medications to penetrate into prostate tissue and lymphatic system
- Lowest risk of C.Diff /antibiotic associated diarrhea/colitis - this is a tricky one but something I have to weight up since I've had FMT for severe 'dysbiosis' and was worse off according to BioScreen after my FMT.
- Taken for sufficient duration to treat infections fully and build antibiotic resistance (e.g. 1 week of macrolides increases S. Viridans antibiotic-resistance) so maybe considering at least a 6-8 week treatment.

Sigh...

Clarithromycin/erythromycin with minoxycyclene or augmentin duo forte or keflex for up to 6 months for the gut and lymphatic system .... That will kill the strep and lower enterococcus ... Ciprofloxican for e-coli.

Or use the triple therapy I listed for up to 2 months ....

The prostate is another story .... IV vancomycin or daptomycin I reckon ..... Won't ever get it here in Australia .....

Enterococcus .... They won't go after that either .... The medical profession is paranoid and scared to death of this one .... But the strep species act the same way, I reckon worse ...

Gotta replace the gut bacteria with good ones and gotta cut out carbs to keep them away for at least a year ....

 

[chuck]

What's the triple therapy you listed? Sorry I seem to have missed it, or do you mean 'Clarithromycin/erythromycin with minoxycyclene or augmentin duo forte or keflex'?

 

[Elph68]

For anyone interested, this is a somewhat longer version of my history. I've copied and pasted from another 'thread' I mistakenly started, intending to post in this thread. My apologies for the double up!

Hello everyone, I am new here, and it is through reading @Elph68's posts that I have decided to take the plunge and post here.

I should first begin with - I don't know if I have CFS because I've never been tested for it, or diagnosed for it. I can relate to having no energy and disrupted sleeping patterns. And, I do have knowledge of is the 'undetectable infection'. Here's my story, told chronologically (apologies for TMI, and/or jokes (they're my coping mechanism, so feel free to have a giggle), any mistakes or assumptions about illness):

January 2012 (24 years old) - Food poisoning overseas, and then I made what felt like a full recovery. For context, prior to food poisoning, I never really had lasting bowel or digestive issues. For the most part, I went once a day, and this part of my life was easy. Not only did I tolerate all foods, I enjoyed them. There wasn't a thing I didn't eat, and only if I disrespected my body did I have any issues (e.g. the one time I ate 750g of blue cheese in 2006) and didn't feel quite right for a week. Anyway, The day I got sick (January 22, 2012), I remember eating bacon and eggs on toast for breakfast and having a watermelon juice. About an hour later, I felt lightheaded, then dizzy. I felt hypersensitive to my surroundings for four hours, like I'd been drugged. Then, it came. Violent diarrhoea. It hurt. For hours. I remember lying on the hotel room floor crying for my mother. And seemingly as quickly as it came, it went away. Within a couple of days, I was fine; sore from visiting the bathroom over 100 times in 48 hours, but otherwise fine.


March '12: I was back home in Australia, and I developed two massive pimples on my back. The doctor gave me antibiotics.

April '12: I started having adverse reactions to alcohol. I went out with friends one night, had a few (okay, like 15-20) beers and didn't have a good day the next day (violent, uncontrollable D). I thought, 'Fair enough, that's normal. You're 25 now and it makes sense not to be able to drink as much as you get older'. I did nothing about it.

The next few months passed, with alternating D and I was again on ABs to treat these pimples or boils that came back on my back. I also developed this weird bald spot on my chin in my beard. I have the densest facial hair of anyone I know (in person), so this was annoying and visible. The GP gave me steroid cream for it. It did nothing.

In July '12, I started having pain in the lower left side of my abdomen after I ate, I'd start getting intermittent diarrhoea with loose stalls. They were rarely watery, and there wasn't blood. I started passing mucus clouds and strings in my stool. I thought it was weird, but didn't really know what to do about it. One day while sitting at my desk at work, I felt my stomach expanding. It hurt. It expanded so much that a button on my shirt was clinging on for dear life. I've always been fond of slim fit shirts, but this was not normal. I left work and went home in a panic. I remember having to piss a lot at that time. So much, like all the time. But, the fact that I had grown to look like I was in my third trimester occupied my thoughts more than my urinary symptoms.

August '12 came around, and I remember having a milk-based coffee and gagging at the taste of milk in my mouth. It was disgusting. I was out for dinner one evening, and after having a glass of wine my stomach grew back to being huge like I was a pregnant woman carrying twins. I remember driving in the car back home and I felt this uncontrollable urge to use the bathroom, but I didn't have to go. I spent the night lying in pain on my side, bewildered at what was happening inside me.

I got worse, I tried milk again, and that wasn't a good idea, so I cut it out my diet completely. The mucus clouds worsened and would happen whether I had to pass stool or urine, and then diarrhoea came on. Watery diarrhoea everyday. I couldn't stop it, and when I had to use the bathroom the need was immediate. I started having difficulty urinating. It was always accompanied by a dull, abdominal pain, it lasted up to an hour after urination, sometimes longer. I had some urine tests done - results showed everything as being normal.

Around September '12, I presented to the doctor again having lost something like 10 kilos in as many days, and with uncontrollable, watery diarrhoea (still no blood). The doctor put me on metronidazole (400mg tablets), and they stopped me from having diarrhoea. I also saw a gastroenterologist for the first time. He immediately said, 'We need to do a colonoscopy'. So I did. Now, here's the strangest thing. Remember the bald spot on my beard? It was about the size of an Australian 10c coin, and overnight (after doing the laxative preparation for the procedure) all the hair in that spot grew back. Who'd have thought there was any correlation there?!

The colonoscopy revealed proctitis and they put me on Colifoam. I also had this strange, LUQ abdominal pain under my ribs from time to time. Like this sharp, stabbing pain. So they did a gastroscopy next. The doctor said I had a sliding hiatus hernia, and then made me take PPIs. I started with Pariet (20mg once a day). The mucus in my stool stopped, and I felt like I had some semblance of control back if I stuck to eating steamed vegetables and homemade chicken soup. It was a boring diet, and for someone who had been able to eat whatever they liked previously, it was difficult to stick to, but feeling sick sucks so I did it. Around the same time, I had hydrogen breath tests done which ruled out SIBO and diagnosed the mildest of fructose intolerances. I was right on the borderline. But I already knew that. I loved eating mangoes growing up, and if I ate too many mangoes, I got an upset stomach. Too much of anything can be a bad thing, so that makes sense.

I continued on my boring diet, and alternated with this growing list of weird symptoms but no clear diagnosis. Frequent urination, stool urgency, a wet feeling on my groin like I'd leaked urine, but I hadn't. I started having the shakes in my sleep after deep exhalation. My girlfriend noticed it and would ask if I felt alright, and I didn't know. I got twitches and weird feelings throughout my legs and feet.

November was ending and summer was starting in the Antipodes. I was at a friend's BBQ and I was in such high spirits, I decided to celebrate with some. Well, beer, not spirits. I had one beer. It was November 22, 2012. I had one beer. That night, at 4am I woke up gagging on something that was the most disgusting, acidic, burning, revolting business I'd ever tasted. It was burning my throat, my mouth, lips, tongue, teeth. It all burned and burned. The lumps on the back of my tongue had grown huge, and everything looked red and inflamed.

The acidic taste in my mouth stayed, and my tongue developed this thick whitish coating on it. I had to scrape it off. The doctor upped my PPIs. The strangest thing was that I'd never had reflux before in my life. I could hang upside down all day and I wouldn't get reflux. I'd already cut out the "trigger foods" for common GERD - I didn't have coffee, chocolate, tomatoes, etc. And now I was taking between 40-80mg of Nexium a day. It sucked. My mouth felt swollen inside, my tongue hurt. I still had bowel problems but they had taken second fiddle to what was happening much further up.

January 2013 - I took two rounds of Bactrim DS because the latest urine test results highlighted at a mild inflammation. Those drugs did nothing. In February, I had an oesophageal manometry. They suck. 24 hours of a tube stuck up your nose and into your oesophagus with this pack you have to wear on you, while the doctor says, 'Hey buddy, try and live normally..' Nice one, doc.

The strange thing here is that they revealed some reflux - but not much more than what is considered normal. I had something like 17% over 24 hours, but 15% is considered normal. The other thing is that I never had heartburn, but I had the sorest of throats. I investigated LPR. I elevated my bed. I talked to my parents about one day needing surgery if the LPR got out of hand. I changed doctors after my current specialist said he didn't know what was going on.

The new one heard this story of mine in February 2013, and said, 'You've had Giardia, and you still have it.' He didn't run any tests, but he gave me Tinidazole to kill the parasite. He gave me Nilstat Antifungal solution and amphotericin lozenges. My mouth didn't burn anymore. Amazing! In March, everything came back. I was cursing the world because I thought I was over the worst of my issues. The specialist put me on SOMAC after he conducted a gastroscopy, my second in five months. He said, 'Some patients respond better to some PPIs than others.' I was taking 80mg a day and they fucking sucked. I couldn't digest food properly and my mouth tasted like rubbish and I got so down.

I started reading lots online about all the kinds of things I could have contracted. My girlfriend's dad is a GP, so he wrote a script for fluconazole. I took it for a week. Boy, I'd never felt better. I FELT SO GOOD! I felt cured. It was like before I took that fateful trip to Indonesia. I could eat whatever I wanted, it was THE BEST. Then, in May, everything came back again. My urinary, gastrointestinal and mouth symptoms all returned, with increasing severity. I was sent to see a urologist because this issue was bothering me the most. He performed a rigid cystoscopy and said everything was normal. He did a KUB ultrasound, all normal. I felt hopeless.

Around this time, I also weaned myself off PPIs. They made me feel like shit, so I stopped taking them. That was a bad idea. Two days after stopping cold turkey, I had heartburn while driving to work. I had to pull over because it felt like a heart attack. So, I transitioned off them. I went from 80mg, to 60, 40, 30, 20, 10, 5. I split the pills and stopped taking them.

In July '13, I got a cold. Nothing abnormal. But after recovering from the cold, everything else got worse. I had the worst motion sickness and fecal urgency. I had accidents in public, too many of them. Everything got worse and I became housebound. It was like having food poisoning all over again.

I didn't know what to do and I didn't go to a work a single day for 2 or 3 months. It was difficult to explain at first because I had missed work periodically for appointments, or because I had flare ups, but this was something else entirely. It wasn't functional, and I wasn't in control. I had two tests done, a Comprehensive Digestive Stool Analysis (it showed some pretty whack dysbiosis going on and the presence of yeasts in the stool), and a stool microbial analysis from BioScreen. This showed that I had an overgrowth of streptococcus, no yeasts detected in this sample, and an undergrowth of anything good and an overgrowth of everything "bad".

I found this website called Bad Bugs, and before receiving the results of those two tests I'd pinned my hopes on blastocystis hominis or d fragilis, but it turns out I didn't have either.

This is when I presented to CDD in Sydney. I had to travel from my home in Melbourne, and was Imodium'd up so I wouldn't shit myself, and didn't eat all day because the pain wasn't bearable. My mum came with me, and I met one of the doctors there. He put me on Rifaximin and Vancomycin. They didn't do much. Maybe helped the bloating, and gave me some control back, but I wasn't healed. The doctor asked me to come back to Sydney to have a colonoscopy and gastroscopy done to be certain of what was happening. I went up to Sydney in November 2013. CDD takes stool samples while you're under so they can get it tested in the lab. Whatever they tested for, came back negative. I had raised white blood cell count in the stool, but I can't remember anything else significant (I'll double check this one). I also had no lactase production. The doctor said whatever injury had been ongoing had wiped out my body's production of this. It wasn't an issue as I'd eliminated dairy products a long time ago.

He said that there was the tiniest site of active inflammation in the colon, so he wanted to treat it. The pathology report said it wasn't overly significant and could have been the result of the bowel preparation, but the doctor trialled me on 10 days of Prednisone. 5 days at 50mg, then 5 at 25mg. It didn't help my bowel symptoms, I just felt "wired" all the time, like I'd had too much coffee or something. Oh, around this time I also had a test for leaky gut. I have it, but don't know how to treat it.

Then, at the start of 2014, they raised FMT with me. I did 10 days. Following FMT, I didn't have as much urgency, my urine symptoms vanished initially and my body shakes went away overnight. Then they came back. On Day 7 of the FMTs, I had violent diarrhoea and became disheartened but got through the rest of the process fine.

Later in 2014, my urine symptoms were pretty bad, and my bowel symptoms weren't so good either. I forgot to mention that I've had a couple of rigid cystoscopies and seen some urologists as well and had countless urinary tract tests done - most of them invasive, and have come out with no diagnosis.

And so, in June 2014, I did my second BioScreen (AFTER FMT). I had an overgrowth of Strep Parasanguinis, E. Faecalis, Bifidobaterium, and yeah. FMT hadn't corrected everything for me. My guess is that my issues are the result of a few compounding factors - bacterial, fungal and then the anxiety of chronic illness affecting my response to everything.

I'm going to be asking my doctor for a way to treat Streptococcus/Enterococcous/Fungus in the gut, because I think there's a strong possibility that they affect my gut, my prostate, and lymphatic system. I also think the drugs I've been on haven't been taken for long enough to successfully treat them.

Anyway, thanks for reading and if you have any questions, please ask.

I believe that your abx treatment has never been long enough ..... You need to be real careful now because u could end up with a bunch of superbugs .....

I have a feeling that strep parasanguinis infection is misdiagnosed as a viral infection ....