Starting BEG nasal spray

[Hip]

Do you know if the HLA halotype is able to be determined from 23andme?

There was a discussion on this sunject on a thread somewhere on this forum, and I seem to remember from it that 23andme will not tell you your HLA halotype.

 

[heapsreal]

Was the BEG nose spray beneficial to you? Thanks.

Did it work, yes. But for me i think sinusutis reoccurrs because we have crappy immune systems. I have low neutrophils which fight bacterial infections. The BEG spray kept the sinusitis away longer than any other treatment. It can irritate the sinuses to and after a week or so you can get some minor bleeding. Another person suggested to water it down with saline 50% which helped irritation.

I did make my own abx spray mixing bactroban cream in water and put it in an empty sinus spray. Id shake it before using it. It worked also. I also did something similar with probiotics which helped also .

Ive tried a few things that have helped but it just reoccurrs. Now i keep abx on hand usually bactrim or augmentin and do 10 day courses. I dont think my sinusitis is as bad as it use to be but could be that i pick up on the symptoms early and hit it hard.

 

[stetson28]

Just being nosey but were your neutrophils very low or just slightly? Mine have never really tested low but I have low antibodies IGG and low individualy IGG subclasses as well as IGA.

 

[heapsreal]

Just being nosey but were your neutrophils very low or just slightly? Mine have never really tested low but I have low antibodies IGG and low individualy IGG subclasses as well as IGA.

My igg ok. Neutrophils steadily dropping over time. Normal range 2 to 7.5. Last test 1.2 lab said moderate neutropenia. But since start of cfs neutrophils 2.4 etc was mostly 1.8 range. Last few years 1.2 to 1.4. My nk function test normal range 13 to 35, i have tests of 6, 1 and a 2 which were taken 6 months apart. So they are quite low also.

 

[Hip]

Did it work, yes. But for me i think sinusutis reoccurrs because we have crappy immune systems.

I thought the BEG nasal spray was to treat the whole disease, rather than any local sinusitis symptoms?

 

[stetson28]

I had been concerned about using cholestyramine or welchol, I badly need all the nutrients and fatty acids I can get and already fight for absorbtion. The no amylose diet would be difficult too, I need heavy choline from potatoes to keep my anxiety and panic attacks at bay. I absolutely had very low hormone levels, everything I touched created shock year round regardless of humidity.

I had some ulcers in my nose and I absolutely do not recommend this because you could do permanent damage but swabbing with 12% hydrogen peroxide 2x daily really cleared up the nasal passages, the sinuses around the eyes are still jacked up though.

 

[heapsreal]

I thought the BEG nasal spray was to treat the whole disease, rather than any local sinusitis symptoms?

No not my intentions. But its not uncommon for those with severe chronic sinusitis to be misdiagnosed as mecfs, thats how bad it can get. Causes brain fog and head tightness and pain with bad fatigue on its own.

At its worst would put me right out of action. Took me awhile to work out if it was a cfs crash or a sinus epidode. Bad sinusitis i would be that blocked up there would be no post nasal drip. The give way signs for me were the frontal headaches and would get worse lying down that headaches would wake me up from sleeping. Im guessing they must have been draining some how but lying down gravity worked against it.

There was a theory from an aussie cfs dr that basically the infections were infecting the stomach from the post nasal drip, staph areurus from memory. Dr whiting who published something on it as a possible cause or co infection in the mid 1990s??

 

[stetson28]

My igg ok. Neutrophils steadily dropping over time. Normal range 2 to 7.5. Last test 1.2 lab said moderate neutropenia. But since start of cfs neutrophils 2.4 etc was mostly 1.8 range. Last few years 1.2 to 1.4. My nk function test normal range 13 to 35, i have tests of 6, 1 and a 2 which were taken 6 months apart. So they are quite low also.

Did you have the pleasure of a bone marrow biopsy just to rule out Leuk? Mine went sky high then tanked then recovered over 2 years but it did not necessarily equate to feeling any better. I assumed something was high jacking my dna.

 

[stetson28]

No not my intentions. But its not uncommon for those with severe chronic sinusitis to be misdiagnosed as mecfs, thats how bad it can get. Causes brain fog and head tightness and pain with bad fatigue on its own.

At its worst would put me right out of action. Took me awhile to work out if it was a cfs crash or a sinus epidode. Bad sinusitis i would be that blocked up there would be no post nasal drip. The give way signs for me were the frontal headaches and would get worse lying down that headaches would wake me up from sleeping. Im guessing they must have been draining some how but lying down gravity worked against it.

There was a theory from an aussie cfs dr that basically the infections were infecting the stomach from the post nasal drip, staph areurus from memory. Dr whiting who published something on it as a possible cause or co infection in the mid 1990s??

I personally am in some agreement with that theory as it pertained to me. I was getting staph yellow sebum gushers every 10 days in my beard area but biopsy only ever showed demodex mites. The doc and I wondered if demodex mites could carry staph that ran wild over a deplete immune response. Ivermectin and a load of herb oils like neem goldenseal geranium ect kept it at bay.

 

[heapsreal]

I personally am in some agreement with that theory as it pertained to me. I was getting staph yellow sebum gushers every 10 days in my beard area but biopsy only ever showed demodex mites. The doc and I wondered if demodex mites could carry staph that ran wild over a deplete immune response. Ivermectin and a load of herb oils like neem goldenseal geranium ect kept it at bay.

My cfs dr worked with dr whiting, he said for frontal sinusitis to get an accurate swab would need to be done through the forehead. Swab inside the nose can be very different to whats in the sinuses. So treatment is trial and error but they would generally try abx that work against staph.

Maybe with the nasal sprays they can get all the way in the sinuses too??

 

[heapsreal]

Did you have the pleasure of a bone marrow biopsy just to rule out Leuk? Mine went sky high then tanked then recovered over 2 years but it did not necessarily equate to feeling any better. I assumed something was high jacking my dna.

No biopsy. They just keep an eye on blood work so far amd continue what im doing.

 

[Little Bluestem]

@stetson28 - you might want to take a look at this thread:
http://forums.phoenixrising.me/index.php?threads/detection-of-mycotoxins-in-patients-with-cfs.22743/

 

[Charles555nc]

I just watched a video on youtube that allows you to snort a couple teaspoons of hydrogen peroxide (mixed in with a much larger amount of distilled water) into your sinuses without it burning as much. (by adding some salt). While I wait to find a doctor to start over with and ask for beg spray and cholestyramine, it seems to help dig into the deep sinuses, especially when I lay down with my face up, while holding the aforementioned solution in my sinuses.

 

[stetson28]

I've done the Hydroperoxide snorting technique and it definitely works but I would not necessarily go and recommend it to someone in case they do permanent damage to the soft tissues or esophageal. You can also try chlorine dioxide which is acified sodium hypochrorite bleach. If you're not familiar with it it's also highly controversial however once you begin to read about it you'll realize that it's used quite often in developing nations to sanitize water. This is the method I'm currently using because I can't get a prescription for Beg spray. It works very nicely.

 

[Wayne]

I would be slightly concerned with the gentamicin antibiotic in the BEG nasal spray, as gentamicin has ototoxicity.

Just ran across this pretty scarey tidbit at THIS SITE:

Conclusions: Gentamicin ototoxicity is vestibular, not cochlear, producing permanent loss of balance, but not of hearing. Gentamicin can be vestibulotoxic in any dose, in any regimen, at any serum level.

Here's the introductory paragraph:

Gentamicin is an important bactericidal antibiotic with two serious potential adverse effects: nephrotoxicity and ototoxicity. Clinicians are well aware that rising serum creatinine levels in patients treated with gentamicin could indicate nephrotoxicity. However, many do not know that, contrary to textbooks and antibiotic guidelines, gentamicin ototoxicity causes impairment of vestibular, not auditory, function.1,2 Vestibulotoxicity is frequently overlooked in patients having gentamicin,3,4,5,6,7 so that severe, irreversible, bilateral vestibular loss can occur, causing permanent imbalance, which is particularly debilitating in elderly people.

 

[stetson28]

Thanks Wayne, I don't think most people are using beg spray anymore anyway. I had much better results with peroxide, msm, colloidal silver, grapefruit seed extract. excetera.
I consider my sinus issues resolved. Hope you making some progress