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The Undetectable Infection

JES

Senior Member
Messages
1,320
i am one of a few that have had a reversal of this only to fall backwards. I had a reversal by starving off something by diet....actually lack of diet...fasting. i stopped eating for 5 days while in hospital for severe back pain. I got shit from the nutritionalist for not eating so i began to eat again and my immune system all began to work properly again..i had no back pain...i got out of that hospital bed and left under my own power..with zero back pain. I got back home and in one week i was back to my old self again. That was back in 1993 and ive been stuck ever since...my immune system is all jammbed up...with what i dont know.
I do know that when i fell back apart that big lumps developed under my skin all over my body. i litterally felt the contents of my gut leak into the rest of my body...every part of my body...even my joints...this is a death sentence and nobody seems to listen or give a dam here in canada. I AM CONVINCED..SOMEBODY..SOMEWHERE ...KNOWS SOMETHING OR/AND IS HIDING SOMETHING...THIS HAS BEEN GOING ON WAY TO MANY YEARS WITH NO ANSWERS.

Interesting story. It might actually not be anything that you starved off, as some time ago there was a rather big discovery made that fasting is able to regenerate your immune system (source). I was very interested in this approach and gave it a go a few years ago. Unfortunately I started experiencing bad side effects from this type of water fast about 24 hours in, ended up with palpitations and feeling too weak to do anything, so I had to quit the experiment after about 40 hours. For this type of fasting to work, I guess you need to do water only fast and probably repeat it periodically to maintain the effects, which is too impractical for me at the moment.
 
Messages
82
JES ....this infection theory by vanelzakker has me intrigued because there are so many cases of cfs that are cured. is it possible then that the body can cure itself of infection by itself or by diet alone without the use of abx. I had an immunologist that was a very kind and compassionate doc. He kept saying to me to stay on my diet and that this all had to do with the nose and frontal part of the brain which would be in line with vanelzakker (spelling?) theory of infection of the vagus nerve. I do have what feels like a permanent sinus infection and lots of nasal problems.

I left something out about my hospital episode. Leading up to the hospital episode ...i was having waxing waning symptoms for many many years..i am the slow progressive cfs type. So...just before the hospital episode, i, like most, had a chemical overexposure (like the gulf war people did) I was redoeing my hardwood floors and back then the stuff they sold was very toxic (benzene, toluene). it was this overexposure of these chemicals that pushed my immune system into fight mode...AND WHAT A FIGHT. I believe its what they call the cytokine storm

so what i believed happened was i had an infection that was slowly growing in my for many many years (H pylori is a slow growing infection) then the overexposure from the chemicals triggered the immune system to try getting rid of the " infection"

What i would like to know from a lot of you people is did this all happen to you in a similar manner or at least did we all have the immune response/fight that went on seemingly forever. Mine was fight..fight...fight...rest...fight ...fight ...fight..rest.. for many many months and years...my tank is now empty...i have no fight left.
 

Daffodil

Senior Member
Messages
5,875
@Elph68 treating enterococcus infection has resulted in great improvements for me, after 23 yrs illness. whenever I stop the treatment, I deteriorate pretty rapidly. the doctor says the inflammation is what keeps our immune systems from controlling the bacteria. it is worse for me because I treated so late.

so there is an underlying disease process, maybe HERV? which is causing the inflammation.

somehow macrophages are involved but my brain is too mushy to understand it all.

one CFS patient was even able to put his tumorous cancer in remission with antibiotics!
 

Daffodil

Senior Member
Messages
5,875
@roonie first we treated Lyme, then tried to treat leaky gut. Also, had stool analysis which is very important. It must be a DNA type stool test. this showed enterococcus at 44% and it should be 0. So we began treating that. This took several years because of how sick I was, my age, and length of illness. also, anti inflammatory seemed to be important for me.

The antibiotics I was on varied over time.

I was completely bedridden near death when I began and eventually was able to walk miles again and even started looking for part time work!
 
Messages
82
daffodil, Elph68, and anybody else....do you folks all have white stuff inside of your saliva that drains down the back of your throat nonstop? And my next question would be....why doesnt someone simply get a microscope and see what this stuff really is? Im sure there are pics on the net to match up this stuff. We need docs with microscopes in their offices like the good ole days
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
I left something out about my hospital episode. Leading up to the hospital episode ...i was having waxing waning symptoms for many many years..i am the slow progressive cfs type. So...just before the hospital episode, i, like most, had a chemical overexposure (like the gulf war people did) I was redoeing my hardwood floors and back then the stuff they sold was very toxic (benzene, toluene). it was this overexposure of these chemicals that pushed my immune system into fight mode...AND WHAT A FIGHT. I believe its what they call the cytokine storm

so what i believed happened was i had an infection that was slowly growing in my for many many years (H pylori is a slow growing infection) then the overexposure from the chemicals triggered the immune system to try getting rid of the " infection"

What i would like to know from a lot of you people is did this all happen to you in a similar manner or at least did we all have the immune response/fight that went on seemingly forever. Mine was fight..fight...fight...rest...fight ...fight ...fight..rest.. for many many months and years...my tank is now empty...i have no fight left.
I did have exposure to organophosphates around the time I became ill, but I had so many possible factors that could have combined: psychological stress, poverty, various drugs (legal, prescribed, etc.), a dog attack, etc., that it could have been a combination. I think I would be a poor subject for study! (Too many possibilities)
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
daffodil, Elph68, and anybody else....do you folks all have white stuff inside of your saliva that drains down the back of your throat nonstop? And my next question would be....why doesnt someone simply get a microscope and see what this stuff really is? Im sure there are pics on the net to match up this stuff. We need docs with microscopes in their offices like the good ole days
I used to suffer choking during the night (on saliva, I think) but not any more, or only very rarely. Been ill since 1994. Don't get particularly copious saliva now.
 

Elph68

Senior Member
Messages
598
JES ....this infection theory by vanelzakker has me intrigued because there are so many cases of cfs that are cured. is it possible then that the body can cure itself of infection by itself or by diet alone without the use of abx. I had an immunologist that was a very kind and compassionate doc. He kept saying to me to stay on my diet and that this all had to do with the nose and frontal part of the brain which would be in line with vanelzakker (spelling?) theory of infection of the vagus nerve. I do have what feels like a permanent sinus infection and lots of nasal problems.

I left something out about my hospital episode. Leading up to the hospital episode ...i was having waxing waning symptoms for many many years..i am the slow progressive cfs type. So...just before the hospital episode, i, like most, had a chemical overexposure (like the gulf war people did) I was redoeing my hardwood floors and back then the stuff they sold was very toxic (benzene, toluene). it was this overexposure of these chemicals that pushed my immune system into fight mode...AND WHAT A FIGHT. I believe its what they call the cytokine storm

so what i believed happened was i had an infection that was slowly growing in my for many many years (H pylori is a slow growing infection) then the overexposure from the chemicals triggered the immune system to try getting rid of the " infection"

What i would like to know from a lot of you people is did this all happen to you in a similar manner or at least did we all have the immune response/fight that went on seemingly forever. Mine was fight..fight...fight...rest...fight ...fight ...fight..rest.. for many many months and years...my tank is now empty...i have no fight left.

Staphlyococcus eperdidimis lives deep in the nose ..... Staphlyococcus Aureus also colonises the nose
 

Elph68

Senior Member
Messages
598
@Elph68 treating enterococcus infection has resulted in great improvements for me, after 23 yrs illness. whenever I stop the treatment, I deteriorate pretty rapidly. the doctor says the inflammation is what keeps our immune systems from controlling the bacteria. it is worse for me because I treated so late.

so there is an underlying disease process, maybe HERV? which is causing the inflammation.

somehow macrophages are involved but my brain is too mushy to understand it all.

one CFS patient was even able to put his tumorous cancer in remission with antibiotics!
Staph slime causes continuous inflammation, which is more like an allergy than an infection ..... staph slime also breaks down MSH which controls metabolism and is a part of the immune systems arsenal against controlling infection ..... staph eperdidimis is 'normal flora' and the most common bacteria on our body ..... and the biggest producer of staph slime

Be worth having a MARCoNS test done on your nose

There are a lot of literature items that state bacteria causes cancer ...... i know here in Australia they have proven it .... also researchers in the US have articles published ...... enterococcus is one of the bacteria proven to cause cancer ..... any bacteria that produces hydrogen peroxide is a potential candidate as hydrogen peroxide damages DNA .....
 
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Elph68

Senior Member
Messages
598
daffodil, Elph68, and anybody else....do you folks all have white stuff inside of your saliva that drains down the back of your throat nonstop? And my next question would be....why doesnt someone simply get a microscope and see what this stuff really is? Im sure there are pics on the net to match up this stuff. We need docs with microscopes in their offices like the good ole days
hi @roonie this is something I had a problem with ..... my daughter also has this and it has caused a chronic cough ..... the problem with the microscope is that they only ever find 'normal flora' ..... while I was in China I hired a lab and found out what was in my normal flora ..... there was a lot of staph eperdidimis..... they found staph eperdidimis in my eye swabs ...... again, normal flora ...... xylitol drops stops the mild burning in my eyes ..... xylitol stops the production of staph slime .....

Doctors are bound by procedure and when there is only 'normal flora' they can't treat it anyway .....
 

Elph68

Senior Member
Messages
598
I did have exposure to organophosphates around the time I became ill, but I had so many possible factors that could have combined: psychological stress, poverty, various drugs (legal, prescribed, etc.), a dog attack, etc., that it could have been a combination. I think I would be a poor subject for study! (Too many possibilities)
Hi @MeSci ..... interesting that you mention dog attack ..... dogs are carriers of slime producing staph ......
 

Daffodil

Senior Member
Messages
5,875
@Elph68 i had never heard of the MARCoNS test. I have felt my sinuses clogged up for decades. I will look into ordering the test....but what if I just use a Netipot? Would that help?

xoxo
 

Daffodil

Senior Member
Messages
5,875
@MeSci i dont have this now but did feel stuff in my nasal pharyngeal area for a long time. I always have some kind of inflammation in there, though.....I never feel that my sinuses ae clear and unblocked.

Have you ever tried a Netipot?

xoxo
 

Elph68

Senior Member
Messages
598
@Elph68 i had never heard of the MARCoNS test. I have felt my sinuses clogged up for decades. I will look into ordering the test....but what if I just use a Netipot? Would that help?

xoxo
Hi @Daffodil, a Neti pot doesn't kill the bad bugs ..... maybe if you dissolve xylitol in it ..... or add betadine or oregano oil to it ..... then it may be worthwhile .....

Xylitol doesn't kill the bugs .... it just stops them from producing slime and forming biofilms, so you have to flush every couple of hours to make it work .... betadine is great but can irritate, my daughter is using betadine/xylitol spray up her nose and for the first time in 5 years her cough has gone .... she does 5 days betadine/xylitol 9 days sauerkraut juice .... Bactroban nasal ointment is also good, but needs a prescription ...... I also use chlorhexidine wash around all my orifaces and in my hair .... the nasty sores have not returned ..... and this helps to keep the slime producing bacteria from re-entering my system as they live on the skin ....

I make my own sauerkraut and kefir and I snort the liquid up my nose .... this has certainly changed the 'taste' in my mouth and the mucosa consistency ......

Kill the bad guys ..... add in as much natural bacteria probiotics I can shovel in, and I also use the sauerkraut juice/kefir on my skin 1 hour after the chlorhexidine wash ..... I have also added iodine drops to my daily regime ...... and betadine throat gargle ...... and I eat xylitol by the tablespoon a couple of times a day

Kill/replace .... kill/replace .... kill/replace ..... eventually the staph (or other bad bugs) are pushed back and the replacements take over .... has worked so far ....

I have finally convinced my GP to treat my partner ..... she is on keflex and probiotics..... the female genital tract is a reservoir and can cause a lot of problems such as burning/itching etc. or a subtle 'abnormal' discharge ..... but mostly the staph kicks out the good flora and takes over ..... then it becomes easier to transfer ....

Check for nasal colonisation and sensitivity of MSSA or MRSA also, it is a normal lab test from your GP .... this will also help to determine the right antibiotic to use ..... rather than just hit and miss ....

I have pretty much beaten my CFS symptoms, even my arthritis pain has gone ..... only time will tell if my remission is sustainable .....
 

Daffodil

Senior Member
Messages
5,875
@Elph68 is it safe to put probiotics up your nose? I would be very careful because that is close to the brain. a few have died with unsterilized netipot water and bacteria going to brain.....?

yea so all this leads me to think gut flora is only one factor in our disease.....we have inflammation / immune suppression coming from somewhere else perhaps.....I think maybe the right anti inflammatory could help...but I don't know.

anyway you are very fortunate to be in remission and very intelligent!
 
Messages
82
i was on tetracycline for over a yr. straight as a teenager. Now if you get tetracycline you may only get it for the most, 10 days if your lucky in Canada. You cannot tell me being on abx for that long didnt mess my flora up. Having said that , i also know people that have been on tetracycline for the same reason but maybe shorter periods and they do not have any cfs symptoms. Maybe their time bomb is coming as mine took many years to manifest.
Now here in Canada you will not get abx from the younger generation of docs...the have been taught not to give it out unless a proven inf. is found. The old docs still do though.
Shortly after my yr. of tetracycline for acne, i got an ulcer so my guess is the abx wiped me clean and opened the door up for a nasty bug of some type to get hold. It grew in me for several years , very slowly. Hylico bactor pylori is a very slow growing bacterium but ive been tested for it...neg. Im also investigating HHV6 because of my family history to this illness.
Because ive had a complete reversal of this by fasting, i know what healthy feels like to be in remission, shall we call it. so i use this complete reversal as my guage to how close i am to beating this completely. Now that im 57, i doubt i my immune system has the internal power to beat it anymore..my tank is out of gas as all my power was spent with the first initial wave of fighting that my body unleashed way back in 1993.
just found out that having a concussion can also interupt bowel flora...wow. doesnt seem to take much.
who else was on abx before they got cfs? interesting to see how many were
 

MeSci

ME/CFS since 1995; activity level 6?
Messages
8,231
Location
Cornwall, UK
@MeSci i dont have this now but did feel stuff in my nasal pharyngeal area for a long time. I always have some kind of inflammation in there, though.....I never feel that my sinuses ae clear and unblocked.

Have you ever tried a Netipot?

xoxo
Not exactly that, but I have tried various things, and don't have much nasal congestion now.
 
Messages
82
i do neti all the time and it helps. All i know is i have severe GERD and i used to get nose bleeds from blood litterally being pushed up from my esophogis(spelling?). Now that im on some sort of diet, my nose bleeds have been, well, lets just say, in controll for now. As soon as i get around a nasty chemical the process starts all over again. I am living in a bubble really , to try keeping this all under control. Its an immune response to, i believe, an infection that never got dealt with so the immune system tried, and failed to get rid of it. Infection from what...i believe the abx i was on for a yr. straight opened the door for some nasty bugs