Remove this ad

Lead

Jul 19 12 3:25 PM

Tags : :

I found this forum looking for the xylitol / lactoferrin protocol. 

Why?  I suspect biofilms in my upper throat and looking for something to break it up.   

I have been passing "stones" - tonsil stones is what I was told by one ENT.  I am not sure they aren't parotid stones or a mixture of both.  But I have a constantly clogged left ear and it gets painful as the day goes on.  With it comes some sinus mucus, drainage like gobs of saliva, and headache around the left eye.  I get brain fog with it too by evening most days.  The stones come and go but I think they are part of the whole picture. 

In the mean time I am sure my gut has problems and with what I am doing I am passing some more solid greenish mucoid stools. 

I realize now tonsil stones are a biofilm; at least my supposition this past couple years of a gob of mucus stuck up on top of the tonsils which no doctor seems to understand makes sense. 

So I am here looking for suggestions, ideas, etc. 

As far as the gut goes, I started having more diarrhea after a round of antibiotics in Dec; the stools were tested by a mainstream lab and I was given an all okay on it. I refused a second round of antibiotics.  These were for an alleged ethmoid sinus infection that showed up on CT scan.  The ear area was clear. 

If I take a dose of bentonite and pysllium I can get more solid stools but still not great.  I do take a lot of magnesium and that might be part of it. 

I can add more as I think of it - I am doing low oxalate, trying to do low salicylate, and try to minimize free glutamate diet.  I do have bad burning mouth syndrome.  I am F in my 60's. 

Quote    Reply   
Remove this ad
Remove this ad
avatar

linenup

fanatic

Posts: 1,685

#1 [url]

Jul 20 12 4:39 AM

kelly:   I don't know what to say about the tonsil issue but you certainly can continue to the lx protocol - checking vitamin D3 status would be a helpful idea since vitamin d is very associated with immune function along with all of the other supportive nutrients.   Obviously bolstering the immune response is always helpful.   I take it they cannot do a culture of this area?


Sounds like the abx wiped out some beneficial gut flora, have you done any probiotics to replenish the gut?   Personally I like kefir I get at Whole Foods along with some multi blend probiotic formulas.   Colostrum can be helpful to aid in the repair of the gut and offers some good immune boosting properties.   

Quote    Reply   

#2 [url]

Jul 20 12 4:56 PM

My D levels were low a year ago May - wasn't the first time.  I had troubles finding a supplement I could handle but did find one.  The first 2 I had tried I reacted to.  By July the D level was "acceptable" at least to the doc - I need to get it checked again next time I get blood drawn.  I do take supplements - around 6000 units a couple times a week and I am outside some. 

I am trying to learn what other supplements I need to take.  I take several right now and my body seems to need a lot of magnesium and other minerals but especially magnesium. 

I probably lost a lot of beneficial bacteria not just this round of antibiotics but over the years.  I am sure it is also a big part of the problem.  The last doc I saw believed you could replenish the gut with yogurt and didn't believe in all these other probiotics.  I didn't agree with him.  I know enough about oxalate to realize that more specialized probiotics are needed to digest it.   I probably lost those back as a kid because there was 2 years I had antibiotics any sniffle I had because of a heart condition (which was surgically repaired).  A lot of my medical history seems to point in the direction that I lost my good flora long ago. 

Right now I am taking 1 Kirkman Saccharomyces Boulardii, 1 Prescipt Assist (SBO), and 1 Swansons Ultimate 15 strain.  When I started the Prescript Assist my gut would rumble after taking it and I started at half a capsule.  I have some 11 strain custom probiotics and some threelac but the CP 11 strain is getting out of my budget at over 200 a bottle with shipping so I am being frugal with it.  I was taking all 5 about a month ago and did a major herx on them so I stopped and cut back.  I just added the SB a few days ago and will continue it for about a week then a week off unless someone can explain to me why I need it daily.  I don't like the aftertaste of it and the yeasty smell of my body the next day.  

I don't have access to places like Whole Foods.  I live in a coastal area with one small grocery store.  We do go every couple weeks to a small city with a Safeway.  I try to buy a lot of what we need online but the shipping for fresh goods is out of my budget right now.  We moved here for the air quality as that was the most important thing at the time.   

The lactoferrin should be here by Monday; the xylitol not sure yet.  I imagine I will start slowing with xylitol tonsil and sinus rinses.  We have a commitment on 26th I don't need to be sick for so I will push further again after that. 


Quote    Reply   

#3 [url]

Jul 22 12 5:22 PM

I would suggest to do a DNA test from metametrix. It is expensive, but they will be able to determine what the hell is inside you. If it is a bacteria, a parasite, a fungus or whatnot. no matter if its in the throat or not. No need to spend money on antibiotics that wont work against parasites, etc. 

It helped me to tackle the trouble I have (was positive for three parasites last year, got rid of two, and now only one parasite is left and helicobacter pylori). I got better, even though I am far from being healthy yet. But maybe once the helicobacter is gone...(?)
Anyway, the big expensive test includes also inflammation markers, fibre, digestion markers etc, and helps giving you an idea about what might be the culprit. After all, your tonsil stones might be just another symptom for something underlying, or they are the cause for something completely else. 

Good luck. 

Sechmeth

Quote    Reply   

#4 [url]

Jul 26 12 7:32 PM

thanks for the reply - I will consider that in the future - it appears to need an Rx order and that can create a problem

I am of the opinion the gut is where most of the immunity stuff happens - if that can be cleaned up the rest of the body has a better chance -

I started the LX protocol - I made a solution of 1 capsule symbiotics lactoferrin (no fillers - YEAH) with 1/2 t xylitol in about 4 oz of water the other day and used 5 cc of it a few times the last 2 days including last night before bed.  I put it in my nose and try to get it to get near my Eustachian tube by popping my ears with the fluid still in the nose and my head tilted (I have done this before just not with this particular solution).   

But today i took the capsule of lactoferrin and about 1/4 t of xylitol mid afternoon after our commitment.  I didn't want to overdo the xylitol not having taken it before and reading about GI upset with it. There seemed to not be any upset. 

I will post updates here as they occur. 

Quote    Reply   

#5 [url]

Jul 26 12 8:58 PM


 I just added the SB a few days ago and will continue it for about a week then a week off unless someone can explain to me why I need it daily.  I don't like the aftertaste of it and the yeasty smell of my body the next day.  

-kelly123

S boulardii is a non-pathogenic and transient yeast. Transient means it cannot grow inside the body, as other bacteria can. Therefore, as soon as you stop taking it, it leaves the usual way. For it to protect your gut from pathogenic yeasts, and to induce IgA antibody etc, you need to take it daily. 
Your immune system doesnt take a break, and pathogens usually dont either. If there is something growing, and the yeast annoys the hell out of it, and some of it dies, as soon as you take a break, the pathogen will grow back. Some of them have a doubling time of only half an hour or even less. 

But I find it weird that you get an aftertaste, and that you smell the yeast. I take 4 capsules daily, never tasted any, and never ever smelled like yeast. 

Quote    Reply   

#7 [url]

Jul 27 12 6:24 PM

I don't know what the smell / taste is from but it comes the day after taking the SB.  I am also very smell sensitive (chemically sensitive) and am bothered by things others don't even detect.  I lost my "radar" years ago with an exposure to enamel paint where I could detect if a place was safe to be in just in a matter of a few minutes being in it.  We moved to where we live to escape airborne pollution from agriculture and manufacturing.  I can't be around many things people accept as part of everyday life - new plastics, new furniture, laser printers, gasoline, list goes on. 

Just to test the theory I took a SB again last night after a few days break, and the smell / taste was there this morning after being absent for a few days.   There is also a possiblity that what I am smelling isn't really "yeast" as my smelling nerves are screwed up too.  I lost my sense of smell for about 6 months about 15 years ago and when I got it back peanut butter smelled the same as cigarette smoke for a long time.  There is trigeminal nerve damage and possible other cranial nerve damage.  I was diagnosed with atypical trigeminal neuralgia 3 years ago.

I took the LF and 1/2 t of xylitol today.  I experienced some minor liver pains last night but nothing too bad (I have a history of hepatitis - unspecified causes going back to toddlerhood).  I also took a virastop each of the last 2 days - not sure how that affects this.  It is also a new supplement.  I need to make it clear I have "too many variables" but then sorting them out I should be able to handle if anyone can. 

I felt fairly good this morning - surprisingly.  I actually went back to sleep after my 6 am pit stop which is rare these days.  I didn't hear my husband get up and go off this morning but was awake and almost up when he returned an hour later. 

Quote    Reply   

#8 [url]

Jul 27 12 11:13 PM

well I suspect I am herxing or at least dumping / detoxing something  ---- haven't had a sore throat for ages - that is until tonight - some chills too but not too bad - have had irritation in my "privates" too all day - will see what tonight and tomorrow bring

Quote    Reply   

#10 [url]

Jul 28 12 11:26 AM

I actually didn't have many more problems last night except lack of sleep.  The throat didn't get worse - the chills didn't get worse either.  So onto day 3 today and will see what it brings.  I already took the LF and 1/2 t of xylitol.  Tomorrow I will probably up the xylitol to 3/4 t. 

I think it is a yeast I detect.  One thing is I dump out the capsules into my mouth as I try to not consume capsules - I react to gelatin as well as veggie capsules made from pine/spruce so I am just in the habit of dumping the contents out of capsules.  I would take the SB late at night and I notice the smells/ tastes the next day but not right when I get up.  I don't know but I do detect something and maybe it isn't "bad" but just bothersome. 

Oh, I go crazy in stores and all and if someone walks up to me and has anything on them (soap, cologne, deodorant, even laundry detergent) I can get set off and the reaction can be physical (headache, asthma for example), brain fog or worse - I have gone suicidal from exposures before.  I had to quit working because of this; I was a college math professor and could no longer handle being around students and colleagues.  Being chemically sensitive isn't fun. 


Quote    Reply   
Remove this ad

#11 [url]

Jul 28 12 8:37 PM

question:

I have been reading other places - some here too - one place said not to supplement with minerals (calcium and magnesium - another one too) - I take these especially magnesium - is this a problem?  or unknown? 


Quote    Reply   

#12 [url]

Jul 29 12 7:06 AM


So sorry that your going through such difficulties Kelly.

This might sound too simple but ...I had sensitivities to smells after I first feel ill though no where near as strong as yours..I couldnt walk down the washing powder isles or go near perfume counters without feeling ill. Cigarette smoke was the worst.  While working on adrenals I discovered sea salt and water helped immensely. Eventually it went away. 

Quote    Reply   

#13 [url]

Jul 29 12 11:13 AM

I have been using Himalayan crystal salt most often and find it had been helping.  I have been chemically sensitive to varying degrees for over 30 years.  I am better than I was a few years ago but it is still a different way to live in this modern age.   There was a major adrenal crash about 5 years ago with lots of other symptoms I am still trying to recover from.  I have a book on Salt by Brownstein I need to pull out and read; it wasn't the book I ordered but the Goodwill I ordered it from on Amazon said to keep it and refunded my money.  I had a major electrolyte imbalance that went undetected for years and it wasn't showing up on blood work and finally was found this fall when I went to someone new I could see "NOW" while the heart was beating erratically.  I started making sure I had 1/2 t of this crystal salt a day in my diet. 

Partial success I think can be reported.  I passed a fairly large tonsil stone at 7 am this morning - about 5.5 mm x 5 mm x 2.5 mm.  It is the largest one I have measured and it wasn't painful coming down.  I switched from using the LX solution in a syringe to doing a "douche".  I have a nasal douche cup that came with Alkalol rinse I am using and block off the other nostril and let the solution drip down into my throat.  I have done this with saline often this past year.   

I am waiting with great anticipation a major herx - will see if it comes.  I know the gut has problems but also know nothing was found with a mainstream stool test.  Today I will try the 3/4 t of xylitol with the LF. 

I have been doing psyllium to get some bulk in the stools, with bentonite.  I hadn't done these this past 2 days and the stools are showing I hadn't.  Using citrus pectin is out right now with the other diet restrictions I have.  I have used small amounts of DE (diatameous earth) but I get more metal tastes with it so I imagine something is being killed with it even though I can't handle more than 1/2 t at a time.   

Quote    Reply   

#14 [url]

Jul 30 12 4:34 PM

Update: 

This is day 5 of taking LX and virastop.  Taking 1 virastop then about half hour later taking 1 LF and today 3/4 t of X again.  I have settled on about 10 cc of the LX solution in the douche cup 2x a day so that adds 1/6 of a LF capsule and some X as I let it drain from the nose to the throat and swallows what drains down rather than spitting it out.   

Yesterday I felt pretty good.  I did have the tonsil stone come down (YEAH) but it was more than just that.  My CPAP and O2 data for night before was best it has been for a while (yeah I have data on how I sleep or how the machines think I sleep). 

This morning wasn't as good as yesterday but then I didn't follow the low oxalate part of the diet very well yesterday and am paying for that with brain fog and body aches.  I this afternoon I do feel better than average for this time of day.  I do have the return of the sore throat from a few days ago.  Other than that no big changes - mood up - throat sore and increase in sinus congestion.  No change in stools except lack of urgency; they still lack shape and have undigested veggies in them and not sure how much of that is from magnesium. 

Quote    Reply   

#15 [url]

Jul 31 12 4:43 PM

Day # 6 - last night felt different - hard to describe - just more spacy than usual - today there is lots of abdominal noise.  Mouth is very irritated.  Lot of metallic tastes (I do get these often).  I have had a few rounds of palpitations / shaking.  It looks like I am trying to detox something.  

During the night thought there was a tonsil stone that came down but didn't find it.  I feel like there is one on the right (the biggies have been left) that is close to dropping into the mouth all day but nothing yet. 

But the big thing today is all the gut noise and other detox symptoms. 

Quote    Reply   

#16 [url]

Aug 1 12 5:39 PM

Day # 7 -

the plan today is to do 3 nasal douches - made new solution this am with 1 LF and 1 t X in approx 4 oz of water - using 10 ml each douche so that puts me at 250x1.25 mg LF and 1 t X for the day. 

I feel something is breaking up there but not sure.  GI stuff is not changing - no noise today.  Mood is slightly better than average again today but pain level is fairly high.  Still feel that tonsil stone on the right I felt yesterday. 

Quote    Reply   

#17 [url]

Aug 2 12 12:00 PM

Day # 8 -

could smell yeast last night so I took 2  SF722 and 1 GSE plus.  That might have been a mistake

I was cold all day yesterday and still today - some chills too today

brain is foggier today

still have feeling something is breaking up by the left ear (Eustachian tube I assume) which is what I want to happen - this ear pain mucus issue has been going on for almost 4 years now

very sensitive to vinegar again today - 2 days ago I was least sensitive to it I have been for years

holding on dosages of L/X

Quote    Reply   

#18 [url]

Aug 2 12 7:07 PM

Had to run some errands this afternoon - pretty out of it - spouse was driving. 

Lots of extra headache pain and urinary symptoms.  Sore throat is still very much with me.  Ears are clogged and reasonable amount of drainage on the left (wish it would stop forever !!)   

Depending on how I feel in the morning I will either stay at this dose or cut in half.   I am not quite as sick yet as I was a month or so ago when I oded on probiotics but I am just as tired as I was then. 

This is day # 8 so it is in the 5 - 10 range.   

Quote    Reply   
avatar

linenup

fanatic

Posts: 1,685

#19 [url]

Aug 3 12 3:53 AM


kelly:  What you describe is MCS (multiple chemical sensitivity) which equates to liver toxicity -   which is also probably systemic toxicity -   you might want to have your cysteine or glutatione levels checked -  these become depleted during chronic infections and are necessary for both immune and detoxification issues.   There are many other techniques to clear the toxicity as well.  Concerning calcium and magnesium, these should not pose a problem.   As always, check with your healthcare professional.

I don't know what the smell / taste is from but it comes the day after taking the SB.  I am also very smell sensitive (chemically sensitive) and am bothered by things others don't even detect.  I lost my "radar" years ago with an exposure to enamel paint where I could detect if a place was safe to be in just in a matter of a few minutes being in it.  We moved to where we live to escape airborne pollution from agriculture and manufacturing.  I can't be around many things people accept as part of everyday life - new plastics, new furniture, laser printers, gasoline, list goes on. 

Quote    Reply   

#20 [url]

Aug 3 12 9:29 AM

hi linenup

I know there are liver issues.  I know they have been there for years.  My first round of jaundice was before I remember - toddler.  After exposure to enamel paint in 1997 toxic encephalopathy was suggested.  Over the years since I have learned to adjust diet etc. to keep the liver enzymes "acceptable" - ie I know how to pass standard liver function blood work and also can tell when the AST / ALT are raised.  I had a nice case of hepatitis one semester during finals week and giving the finals, grading them and doing term grades was lots of fun as sick as I was.  I remember grading Calc III finals with barely being able to raise my head up off the pillow.  I told the doc I was seeing back then I had hep and he insisted on the blood work being done before he believed me. 

The MCS goes back to pre 1997 however.  We moved to the coast to escape airborne pollution as the agricultural chemicals being thrown out in the soy and corn fields in the midwest as well as on the grounds of the college I was at were killing me.  The first MCS experience I can recall was at age 11 where we were house hunting and I could tell which houses had natural gas furnaces just walking into the houses and my mother thought I was crazy.  I didn't major in chemistry in college because I couldn't handle being in the chemistry building. 

I had another toxic exposure just over 5 years ago that I thought I would die from.  I spent the summer 5 years ago 23/7 either in bed or on the couch only getting up to get fluids, food and make pit stops.  I am still recovering from that and trying to catch up on work that is now 5 years behind.  I know my liver was really bad then and probably should have gone to the hospital but at the time I decided I would rather die.  I remember telling my husband I didn't want a liver transplant. 

My liver ached a little last night - not too bad so I didn't try to dump extra antioxidants in me.    I am sure this process is dumping toxins into me even though I didn't wander onto this site because of "gut" issues as many of you have.  I came for dealing with what I suspect was throat / ear / sinus biofilm problems trying the LX protocol.    But as I said before, I am sure there are gut issues too just they weren't the most pressing problem as the daily ear pain for almost 4 years now is what is most crucial to me.  It might not be the most crucial medical issue but the pain is what rules my life. 

So I know there are liver problems.  I have been told because of blood work I don't have a liver problem; I know otherwise. 

Quote    Reply   
Remove this ad
Add Reply

Quick Reply

bbcode help