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Adventures in lactoferrin

Alvin2

The good news is patients don't die the bad news..
Messages
3,024
@Alvin2 ,

It's not a miraculous cure for ME, but may be good as part of a regimen. Smaller doses, pulsed may work even better.
I'll be reducing the dose once I've knocked out this lung virus.

Prices for everything have soared. madness
Lets just say money is insanely tight.
Plus i have no idea if it would work, having tried countless things to no effect statistically its chances are very low.
 

Crux

Senior Member
Messages
1,441
Location
USA
I received some intranasal lactoferrin today.
It's possibly more effective than oral types, researchers have written.
It's very early in my personal trial, but I'm reporting anyway.

I used the spray in my sinuses and into my lungs, several times.
It tastes like holy hell bitter and burns a little, probably from the lactoperoxidase.
I don't know if folks may be sensitive to some of the ingredients, preservatives, etc.

I've been feeling so crap , it was worth the risk of testing it.

It's somewhat inflammatory. I'm having mild paresthesia in my feet.

The upside is I'm feeling better, less fatigue, and the death metal taste in my mouth is gone.
for now. The neck lymph nodes are less hard but still swollen.

The side effects are no worse than any other antimicrobials I've tried. I'll continue with it.
 

Crux

Senior Member
Messages
1,441
Location
USA
Day 2 of intranasal lactoferrin,

Very surprised at the results so far. Body aches better, lymph nodes smaller, metallic taste gone.
Fatigue from infection improving. Sleep was good last night.

Wouldn't recommend shooting mist into lungs. It worked for me, but probably wasn't necessary.
It was an off label choice.

Using the lactoferrin intranasally is probably all that's needed. It's strong, and it works!

I've stopped all other treatments, and will continue the spray.
It's liposomal, so it looks like both the delivery method and more bioavailable form
make it more effective.

Stoked.
 

Crux

Senior Member
Messages
1,441
Location
USA
Updating daily may be too much, but as long as there are changes, I'll continue.

I've been looking to buy liposomal lactoferrin to make my own nasal spray without the additives.
No luck.

There's a company in the UK that makes a liposomal nasal spray and oral capsules. It doesn't seem that they ship to the US. It's called' Apolact'. It still has additives, but may be less bitter than the' Sesderma Lactyferrin'.
I just hope that these products become easier to find and that pharma companies don't hoard them.

I watched a youtube about making liposomal vitamin c. It seems possible to make liposomal lactoferrin the same way, crudely. I would need an ultrasonic cleaner. Perhaps in the future...

Still improving :

Better sleep, able to sleep again after pee wake up, rare.
Beginning to cough up a little phlegm. Nose running slightly
Lymph nodes smaller, still swollen
Less paresthesia, was mostly from other treatments, now stopped. (Still recovering from calcium deficiency nerve damage).
Energy was better yesterday afternoon. I overdid it, like I do. Slow this morning, not big PEM.

I'm taking way more than the suggested twice a day sprays. 5-10 times daily
I confess to taking a few sprays to the lungs, not as many. ( I know, I know )
 

Crux

Senior Member
Messages
1,441
Location
USA
Still improving from the addition of the Sesderma liposomal lactoferrin nasal spray.

Will be decreasing dose, but continuing even past when obvious symptoms stop.
Sinuses are minorly sensitized, but at the same time a wound in a nostril is healing.
Kicking up small amounts of mucus from lungs and sinus. good
lymph nodes smaller, still palpable.
Less fatigue

I'll continue the nasal spray past symptoms because , if there's a chance that the lactoferrin can enter tissues and deactivate viruses, I'm all for it.

I've been able to order the Apolact. nasal spray from TDCare out of Milan. Hope it all goes well.

https://www.tdcare.it/en/about-us.html
 

LINE

Senior Member
Messages
842
Location
USA
Lactoferrin was one of the better therapies I tried but you must be careful with it. The idea behind it was to eradicate biofilms which allow pathogens to hide. When the pathogens are locked in a biofilm, then the immune system cannot effectively get to the infection hence chronic activation of immunity (auto-immune) and with chronic activation comes chronic oxidative stress and with chronic oxidative stress comes all kinds of problems.

You should never push hard with lactoferrin since it is releasing biofilms, this can be counterproductive and somewhat dangerous. Dosages of lactoferrin should be monitored carefully, herxing is a sign of too much, I backed off until the herx cleared then reapplied lactoferrin. It took some time before I could dose daily then after some time, herx never happened which I would take as a sign of minimal biofilms.

(Everything points to gut infections and the gut is a prime area for biofilms. I watched my abdomen shrink from looking like 6 months pregnant to nearly flat. The abdomen was hard (no beer belly btw), this is a sign of high inflammation. I also used natural antibiotics after trying pharma antibiotics. )
 
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Crux

Senior Member
Messages
1,441
Location
USA
Thanks @LINE ,

I can also say that my gut function has improved by a lot. I did have a herx. (endotoxin release) reaction when I restarted oral lactoferrin, especially when I increased the dose to 500 mg.

Even though folks may have strong reactions to lactoferrin, huge doses have been administered to premature neonates to prevent sepsis and necrotizing enterocolitis. More studies are to be done.

https://pubmed.ncbi.nlm.nih.gov/32846100/

All of the patients survived to discharge. Bovine lactoferrin at doses up to 300 mg·kg-1·day-1 is safe in preterm infants.
 

Crux

Senior Member
Messages
1,441
Location
USA
Still improving. Intranasal lactoferrin has been the only recent treatment that has knocked down this
respiratory virus for me.

Energy is almost to baseline. We'll see if it surpasses it.

Here's a paper written by the esteemed Dr. Douglas B. Kell, and Dr. Etheresia Pretorius.
She specializes in cells and proteins in the coagulation system. She is involved in the apheresis study for long Covid that's caused much excitement and hope here on PR.

Dr. Kell is a microbiologist who's written much about iron dysregulation, infections, and now, lactoferrin.

https://www.frontiersin.org/articles/10.3389/fimmu.2020.01221/full

I feel like we are on the cusp of understanding better the causes of ME/CFS, with more effective treatments.

This is great !
 

splusholia

Senior Member
Messages
240
I suffer from constant sinus infections which worsen my ME. Could Lactoferrin help this, perhaps? I don’t know if there’s a causal link between my infections and ME.
 

Crux

Senior Member
Messages
1,441
Location
USA
@splusholia ,

I believe lactoferrin may help sinus infections. It has strong antimicrobial effects. If you can find a nasal spray with it, that may work even better. It has for me at least.

There are different sites that sell it, but not easy to navigate. Still worth the time, very much.

Before I tried the nasal spray, I would open a capsule of lactoferrin and let it dissolve in my mouth.

I believe infections of all sorts, and susceptibility to them is a direct link to ME.
 

splusholia

Senior Member
Messages
240
@splusholia ,

I believe lactoferrin may help sinus infections. It has strong antimicrobial effects. If you can find a nasal spray with it, that may work even better. It has for me at least.

There are different sites that sell it, but not easy to navigate. Still worth the time, very much.

Before I tried the nasal spray, I would open a capsule of lactoferrin and let it dissolve in my mouth.

I believe infections of all sorts, and susceptibility to them is a direct link to ME.

I have managed to order a nasal spray from Italy to the UK. I got it from Amazon, just in case anyone else is interested. Do you still take it orally as well? Or you have replaced that completely with the spray? I’m just wondering whether some oral intake might be good for the gut as well…
 

Crux

Senior Member
Messages
1,441
Location
USA
I have managed to order a nasal spray from Italy to the UK. I got it from Amazon, just in case anyone else is interested. Do you still take it orally as well? Or you have replaced that completely with the spray? I’m just wondering whether some oral intake might be good for the gut as well…

Did you order the Apolact. brand ? I did too . Amazon UK wouldn't ship to US as far as I know.
I did order from the tdcare.it site . Just ordered yesterday. Looks good.

Been taking sesderma brand, It's good but the taste is barely tolerable. It will trickle down the throat.

Both of these brands are liposomal which looks to be more bioavailable.

I still take the blf ( bovine lactoferrin ) orally. My gut could use some help. It does work that way.

I'm glad you've ordered the nasal spray, it's amazing.
 

splusholia

Senior Member
Messages
240
Did you order the Apolact. brand ?

Yes! It should arrive next week. I’ll post an update when I’ve used it for a bit, in case it helps someone else. I have a lot of sinus/respiratory issues and a weak immune system.
 

Crux

Senior Member
Messages
1,441
Location
USA
Had a setback from lowering the dose of lactoferrin nasal spray. Inflamed lungs, cough, bad taste.
Sleep not so good, fatigue bad.

I'm upping the dose and will remain until all symptoms gone.
 

splusholia

Senior Member
Messages
240
Had a setback from lowering the dose of lactoferrin nasal spray. Inflamed lungs, cough, bad taste.
Sleep not so good, fatigue bad.

I'm upping the dose and will remain until all symptoms gone.

What dose do you currently take?
 

Crux

Senior Member
Messages
1,441
Location
USA
What dose do you currently take?

I upped the nasal spray to 12 or more pumps a day. The oral capsules 750-1000 mg. a day.

This virus seems to be putting up the fight of its miserable life.

I'm better today, slept better, but tissues were inflamed last night, better today.
 

LINE

Senior Member
Messages
842
Location
USA
I suffer from constant sinus infections which worsen my ME. Could Lactoferrin help this, perhaps? I don’t know if there’s a causal link between my infections and ME.

Biofilms are known to inhabit mucus membranes which include the sinus area. Chronic infections that will not resolve with antibiotics are likely stuck in a biofilm environment. Lactoferrin is a naturally made chemical that has the primary use of preventing biofilms. Dr. William (Bill) Costerton was the grandfather of biofilm research, you should be able to find his research online.
 

LINE

Senior Member
Messages
842
Location
USA
Again, be careful with dosing, it is not necessarily the lactoferrin itself that is problematic but what lactoferrin does, mainly remove biofilm environments. If you have chronic infections, likely you have chronic biofilms. These biofilms must be removed slowly, too fast, you will risk adverse reactions. Just use common sense and dose responsibly, back off if too much, you can resume once things have balanced.