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Post by bannanny on Feb 28, 2010 18:20:51 GMT -5
Can I ask what supplements you take on a daily basis frito? Since you know so much you must know what helps the most eh? ha!
hugs ~~ bannanny
P.S. I have alot of lung congestion right now, but I've never tried the lavage thing before.
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Post by fritolay66 on Mar 3, 2010 19:36:12 GMT -5
Update:
A few days after my last post, I again developed the flu or what I thought was the flu. I had the whole schameil over again, violent chills, high fever, and my body ached so bad I trouble getting out of bed, much less crawling back into it. This was just a couple of days after I experienced the nasty taste stuff I told you about.
I felt so bad, I went to a nurse practitioner today, and indeed, I do have quite a nasty sinus infection going strong, and thrush from the infection. Yeeuck.
Considering my experience, I am not sure if lavage would be the way to go for anyone and after this bout I have stopped. In seeing this practitioner, I now have a set stage to have lab tests in the future should her prescriptions fail to address my issues. I didn't bother to explain MARCoNS, but she was aware of my extensive antibiotic therapy, although none recent. I have been given a high dose antibiotic, nystatin, and mucinex to keep it coming out.
There is something very obviously wrong with my sinuses, wrong enough to make me incredibly ill. I never would of known I had a sinus infection prior to doing this. It took nearly two months to cut that infection loose. After doing this, it is my hope some will just have the Staph culture and save yourselves the trouble I went through.
Frito
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Post by fritolay66 on Mar 3, 2010 19:44:25 GMT -5
Bananny,
On a daily basis, I take Cat's Claw (6g), Sarsaparilla (6g), and Oregon Grape Root (4g).
I also use a detox fiber, either apple pectin fiber mixed with colonix and Happy Tummy, or the thysilium cleanse I love so much. Lots of good stuff for the liver.
Thats it.
About the lavage. I am not sure if that would be something one would want to take on themselves. If my silent but incredibly infected deep sinuses are a learning tool for others, and I could do it over again, knowing what I know now, I would have done the staph culture and treatment. Cost would have been about the same, but the test would have been more pleasant to go through than what I just went through.
Frito
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Post by jj on Mar 4, 2010 12:01:01 GMT -5
Fito
Sorry to hear you were ill again. Hopefully the infection will be on it's way out now and your experience was a case of getting worse (herx) before getting better. Looks like you have both bacterial and fungal issues being addressed.
Best of luck and keep us updated.
JJ
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Post by fritolay66 on Mar 4, 2010 14:05:01 GMT -5
JJ,
Thank you for the good thoughts. Yes, herx did go through my mind but the experience of having that infective mucous actually come out of my nose like a dam letting loose, and I knew I had let something loose. It so darn hard to explain because this all happens in your nose and in a part of your throat behind your nose you can't actually get to or see. Spitting it out and tasting it, I became alarmed because it really was yuk infective.
Yes, bacterial and fungal all from my sinuses. I have to go through an application stage for a sliding fee scale type of care, so I am waiting on that. But considering my headache locations, she made the observation that my sphenoid sinuses are more than likely involved. She said the thrush is also from this sinus infection and is quite common. This whole experience has been mind boggling for me. All of this trouble from my sinuses.
I went to the dedicated Lyme boards and posted some questions. I have gotten several responses in which I thought others may be interested in, concerning biofilm and the sinuses and will update with those as well.
How does one have a deep sinus infection from hell and not "know" it? Thank God I found this information and am able to do something about this too.
Frito
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Post by fritolay66 on Mar 4, 2010 14:09:11 GMT -5
Bananny,
I was just thinking about that NP yesterday, and you had said you had a lot of lung congestion. She mentioned congestion, but my lungs were clear, my nose and throat were not. She insisted along with the meds, that I purchase Mucinex. She said there is nothing better than that for loosening and moving it out. And that I was to keep taking it past my other meds, 30 days out. She said it would help to keep things moving, as antibiotics wouldn't be able to get at it all by themselves. A box is kinda of expensive, but there is actually quite enough to get through the better part of a month.
Frito
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Post by fritolay66 on Jul 7, 2010 21:46:03 GMT -5
Fair Use Excerpt: Dr. Shoemaker is the first person, and this is a post by him that can be found at tinyurl.com/2d56ekwExcerpt: "There are many lessons in this case. Lyme is a major unveiler of HLA susceptibility to mold. Before this patient agreed to IV anything, however, he needed an expanded differential diagnosis to ensure that his illness symptoms weren’t solely due to untreated Lyme. I have posted on use of C4a as a marker for biologically significant living Lyme before; we can tell if IV antibiotics are needed using readily available biomarkers, particularly C4a. BUT, the paper on chronic Lyme and C4a isn’t published, so withstanding criticism from those who have published will be harder. I am uncertain that this patient ever had Lyme. He now has one of the few MRCoNS that is resistant to Vancomycin, however, a fact that alarms me immensely. This organism causes illness in those with low MSH and [glow=red,2,300]is a reservoir for the plasmids coding for antibiotic resistance later found in big brother Staph aureus. [/glow] Always look for mold; always look for confounders. Ritch Shoemaker MD Pocomoke, Md.....end excerpt. I want to add to this, Streptococci pyogenes should also be included in his reference to Staph. !!!! Frito
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Post by fritolay66 on Jul 11, 2010 14:27:30 GMT -5
The sinuses and the throat are one of the hardest places to clear from resistent bacteria. This would provide a continual resevoiur of those plasmids identified in conferring resistence to other bacteria, esp. MRSA and VRE. Colonization would also do the same thing versus active infection.
Anyone have petechaie, red bumps at the back of their throat? Ever had a sore throught in which tested negative with the quick test strept? We have, three times over the course of several years. Yet, I am growing it in petris.
Some of us have also experienced a thickening in nasal hair. What about the mucous in your nose. Do you have a runny nose, or do you have congestion? Has your nose ever dried up with sticky mucous, and sometimes, if you rub your nose, it hurts because all the mucous has dried to this crust like form?
Frito
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Post by morghunter on Jul 11, 2010 16:34:41 GMT -5
Frito, You describe my symptoms perfectly. The sore throat that comes and goes, the dry sticky mucous that if disturbed will bleed, the petechaie and the lump in the throat that is impossible to swallow. I have seen Dr. Oz use what he calls a small tea pot to flush out the sinuses and he actually used it on T.V.. If you know where they can be found, please post where and how. Later morghunter.
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Post by jj on Jul 11, 2010 17:23:23 GMT -5
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Post by toni on Jul 11, 2010 18:25:28 GMT -5
I think it was last year or the year before...I'm bad with the time "of morgs" because I sort of block it out, but I had that "nose congestion" and coughing up junk everytime I got into a hot steamy shower,so bad one day that I thought I was going out that way, if you know what I mean. The gags and congestion were so bad, I couldn't even catch my breath.
Then I thought about Robbie (all of ours dear friend here) that we loved so much, and she was diagnosed with Pseudomonas Aeruginosa...(remember)?
I began reading much about it. How IF it gets into the lungs the survival rate is extremely low...and NO meds on Earth work once a threshold has been hit.
She was so weak and ill...and there is a great part of me that is so grateful to her (for getting that diagnosis) because I truly believe that because she told us all about P.A. - and I read and found that Ginseng (yes the supplement) was in medical literature as being "a CURE" for P.A. me and Mr T took it daily.
We both cleared up, (our congestion) and haven't had a problem since.
Now...did me and Mr T have P.A? I don't know, but...we figured any diagnoses we got, or others had gotten, since we're all in the same boat "pratically" ... that we might safely "assume we might have it"...because of the many other same-sames we all experience/exhibit.
So...(also because Ginseng) isn't like taking anything lethal, or dangerous like medications (imho) we took it for the: "just in case we might have it factor"...and I will say today, that that coughing, and mucousy phase we went through, is and has been eliminated.
Ginseng...I say it treated that problem (in our opinions) because we took nothing else...and did nothing else for that problem. Noses are clear, breathing is great. Not anything like that time "was" before we took 1 ginseng a day.
If "Ginseng" doesn't have any interactions with what ever med one might be on, it really might be advantageous to look into.
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Post by fritolay66 on Jul 11, 2010 22:21:58 GMT -5
Morghunter,
I don't know if you have been able to read the previous posts chronicled on pages 1-3 of this thread. But you mentioned an interest in the neti pot. I orignally also was interested in the neti pot, but my nose was so congested, that I didn't feel that gravity in which the neti pot principle is based on, would be able to get to the deep seated infection I just knew I had going on. But the first pages chronicle my experience with using what I chose instead of the neti pot, which was a syringe for nasal flushing. The syringe method relies on forceful injection and forcefull flushing instead of gravity and the Neti pot. I have had problems in the past with my sphenoid sinuses and was trying to get to them by forecful flushing.
But what is important about those posts is that it chronicles my awful experiences with my choice as well. I had some god awful drainage ensue because of my flushing, and I developed the "flu". I went through a couple of bouts with it, and I associated that development with whatever I was successful in knocking loose. And whatever I did knock loose was infection, it smelled like infection, and my bodies reaction to swallowing it, was immediate and took me two months to recover from.
I ended up on high dose antibiotics because of what my home nasal treatments caused me. So if I may, I caution with attempting this. I really feel having a reg ole doc on hand for any complications. And in hindsight, knowing what I am growing in my petris still to this very day, is that what I knocked loose could very well be dangerous. If what I knocked loose was S. Pyogenes, what I believe is in my petri, than the complications of sending it on down into my intestinal tract is truly frightening to me. I have geared up again on my intestinal tract and supportive measures I use.
If I had a chance to do it over again, and I had healthcare, I would have had the Nasal Api Culture, for both staph and strept. Because my own personal quick strept tests were negative and in light of my nasal and throat symptoms and experiences, I would have insisted on two tests for strept anitbodies.
I would have done the nasal lavage anyways, but I would have been already on antibiotics when doing it. Antibiotics targeting the gram positive bacteria I have growing in my petris from my nasal and lacrimal secretions. A double whammy.
I tell this because I believe any whom read this, including you, should know some of the considerations of my own experience prior to embarking on what I have done.
My very best to you.
Frito
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Post by fritolay66 on Jul 11, 2010 22:34:18 GMT -5
Morghunter,
I was so happy to see a post from you!! Just wanted to tell you that.
Toni,
Thanks for your input.
Frito
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Post by Baraka Obam on Jul 11, 2010 22:43:10 GMT -5
The all time winner for sinus repair, there is NOTHING better.
I will put GRAPEFRUIT SEED EXTRACT mixed with water in a arosol bottle, the mixture can easily be adjusted by you. If your sneezing like mad thats just about right.
I myself, don't any of you proper people try this, you may be found out, but i can at this time use strait GSE shoved all the way inside with my tiny little pinky.
As always people do not use full strength GSE at first water it down and the reaction, if too strong is not plesent.
If you will be doing this, try to tune it in BEFORE you have to go somewhere, the sneezing is actually refreshing, do not hold it in, sneezing was made to blow out invader.
I know alot of you have needle nose, yes, needles inside your nose, think its the hair, well why didn't it do it before, hmmmm,
What I want to say for those of you that can follow thru, slowly but surly, your nose will finally give up the needles, blockage, dryness, and just all around pain that the sinus has become.
If you use salt water, you still have all the problems so whats new.
Wow I am breathing right now with a open passage. I love it.
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Post by fritolay66 on Jul 11, 2010 22:44:45 GMT -5
I again refernced testing in my above posts, so I wanted to repost the Api Staph culture testing information. I also wanted to post the blood work done at a lab for the strept titers I mentioned in my post to Morghunter for any interested.
The Api Staph Culture
Recommended lab, Esoterix Labs. CPT Code# 609980, Diagnosis Code# 478.21 I am not sure about if they can also test for Strept for this sample as well. I would insist on strept being included in the lab order from ones physician. I do not know the daingosis code yet, but will include it, when I find it.
The Strept Titers
There are two ususally done for testing for strept in which the quick strepts do not show positive. These tests will show the antibodies created to fight the infection of strept by testing for the two most common antibodies prodcued from it.
ASO Titer
Antistreptolysin O (ASO) titer is a blood test to measure antibodies against streptolysin O, a substance produced by Group A Streptococcus bacteria.
Alternative Names ASO titer; ASLO
This test is used to detect prior infection by Group A Streptococcus, the bacteria responsible for diseases such as:
Bacterial endocarditis Glomerulonephritis Rheumatic fever Scarlet fever Strep throat
Normal Results The ASO level is usually less than 160 Todd units per milliliter, other sources reference 200 Todd units.
Normal value ranges do vary among different laboratories. Make sure you are aware of those ranges with the lab you choose.
I referenced Quest Labs for pricing. CPT Code # 86215 $107.00
DNase-B-Antibody
This test is most often done to tell if you have previously had a strep infection and if you might have rheumatic fever or kidney problems (glomerulonephritis) due to that infection.
Normal Results A negative test is normal. This means:
Adults: less than 85 Todd units/mL School-age children: less than 170 Todd units/mL Preschool children: less than 60 Todd units/mL
Note: Again, normal value ranges will vary among different laboratories.
What Abnormal Results Mean Increased levels of DNase B levels may be due to:
Rheumatic fever Post-streptococcal glomerulonephritis after strep throat or strep-related skin infection.
Considerations When used together with the ASO titer test, more than 90% of streptococcal infections can be correctly identified.
Alternative Names Antideoxyribonuclease B titer; ADN-B test
CPT Code # 86060 $53.05
Diagnosis Codes would be for Strept Infections. Will edit those diagnosis codes when I find those as well as some more info about these particular tests.
Frito
Addtional info:
From Wikipedia, the free encyclopedia
Antistreptolysin O titre (AS(L)O titre or AS(L)OT) - titre of (serum) antistreptolysin O antibodies is a blood test used to assist in the diagnosis of a streptococcal infection or indicate a past exposure to streptococci.
The ASOT helps direct the antimicrobial treatment and is used to assist in the diagnosis of scarlet fever, rheumatic fever and post infectious glomerulonephritis.
A positive test usually is >200 units/mL,[1] but normal ranges vary from laboratory to laboratory and by age.[2]
The false negatives rate is 20-30%.[1] If a false negative is suspected, then an anti-DNase B titre should be sought. False positives can result from liver disease and tuberculosis.
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Post by fritolay66 on Jul 11, 2010 22:48:07 GMT -5
Thank you Baracka for your input!
I am actually able to nose breath now as before I was not. The sticky mucous and the drying like cake has gone down to a slight caking every other day.
Where I used to get those black specks out my nose, I get a few every now and then. Where my mucous was discolored and thick, I am now having less of it, and bouts with clear free flowing mucous. I still do get the sticky yellow but I never had clear mucous until recently. I also from time to time get blood fibers. These aren't the fibers we see all the time, but little blood clots that end up stringy in my kleenex from blowing every once in awhile.
So the color, the consistency, and the black specks are all changing, or seem to be, as there isn't as much as when I started this. But they are not gone as of yet, nor are the red petechaie at the back of my throat. And I did have a mild sore throat the other day, but I was also treating my throat during that time as well.
I am so glad you have found something in which gives you relief.
Frito
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Post by fritolay66 on Jul 12, 2010 0:34:16 GMT -5
For Neti Pot use: www.youtube.com/results?search_query=neti+pot&aq=fConcerning syringe use, the stream is more directed out than letting it just run out the nose. I was concerned about whatever came out touching my skin around the nose and with use of the neti pot. Same concern for blowing my nose after use with a syringe too. I always and never fail to wash and treat my skin around my nose and upper lip/chin area after performing lavage of my nose. I have had only minor bumps develop in the area over the course of months. Very minor and were easily taken care of. Also, if you are one in which suspects active/chronic infection, don't leave the kleenex open at the bottom when you blow your nose. I found you blow the bacteria right on down to your chin, or neck, or chest if shirtless when blowing. The kleenex must be entirely closed when blowing. After lavage, one might find the quartered paper towels better able to stand up to all the fluid that will follow when blowing. Frito
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Post by fritolay66 on Jul 12, 2010 0:41:06 GMT -5
Hopefully another useful observation.
Anyone have a cherry red tongue after a sore throat? What about white bumps on that cherry tongue? Mine progressed from the cherry red tongue to the white bumps to a white covering in which I interpreted as thrush, but I suspect is bacterial in nature and not fungal. That white coating is gone, but has now turned dark where the white filmy stuff once was.
This is associated with Strept and is called a strawberry tongue. The black is tyrosine related and indicates a superinfection.
Frito
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Post by fritolay66 on Jul 12, 2010 0:52:47 GMT -5
Baracka, can I ask you a question, I sure hope you don't mind. I am asking from the viewpoint of one lesion sufferer to another. Do any of your lesions when they are gone, do any of them hypopigment? Leave a white mark or are yours red? Where my lesions were, the only scarring I have is hypopigmentation, not pitting or keloid or anything like that. Just hypopigmentation for most of them. I think there are fewer than five that pitted and such.
I noticed at MDR you had more tan skin, kinda like mine, and was wondering what you have seen or been through?
Frito
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Post by Baraka Obam on Jul 12, 2010 8:07:00 GMT -5
T he lesion spot will either be nothing, a scar, or the white plastic showing thru the skin.
This is not pigmentation, it is the plastic liner that protected the caviar like red stuff.
If I run strait hydrogen peroxide 35% or Grapefruite seed extract over the white plastic area it will let loose of the fake skin covering and you will see the white plastic stuff in all its gory.
This plastic material is porus and will allow yellow fluid to run. The fluid will form a non conventional scab of sorts.
What I am doing right now is forcing open the lesion/TUMORS, UNCOVERING them so they can be further destroyed.
MAKE NO MISTAKE, IF YOU HAVE WHITE SHOWING THRU YOUR SKIN THERE IS STILL A LIVING TUMOR UNDER THE SKIN.
I TAKEN MANY MANY OF THESE APART,all have a central feed vein, all have the plastic barriers, all have the caviar like red material that bleeds.
Some people are inclined to think their lesions or their involvment is SPECIAL, it is not, this disease and its parts are the same exact symptoms.
Where some look at the white plaque and see a fish body, I know it is the protective white cover, where others see red eyes, which many times there is a feed vein on both ends, I see those red eyes as the spot right over the feed vein.
This is not a designer disease, the sooner people unite and relize this the better. We all have the same symptoms they are many, liberated by time, the longer we are infected, the worse we get.
That is why most of us are in our 50s and older, the others, well they were our children.
Was that a good answer, I have pictures that show the pieces of the lesion/TUMOR!!
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