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Post by QuestionHair1 on Jan 2, 2006 15:43:22 GMT -5
I know I have been through at LEAST two cycles of shedding tiny flakes that would spin in circles - that's a "SPRING" thing. I would get up in the morning, go lean over the tub and comb and comb until it would stop "snowing" these tiny little spinning flakes. They would be different sizes, but all would spin. Eventually, that cycle would end. Then there have been cycles of INTENSE itching at various "hot spots" on my scalp, which I would pull out hairs with "gel tubes" around the follicle, even under the scalp in the root shaft. Of course, I would get a lesion, and it would only get worse as the "weird hairs" would just expand like some mushroom ring, thus the lesion or bare spot too. I am not experiencing any of that now, and hair is growing in evenly. I posted on another thread that the photos by Ever Hopeful, in the burrowing album, look EXACTLY like what I see in the scabs that cover the lesions on the scalp. Now, I just went through the album of photos just posted this morning and was reminded of the whole nose stuff cycle - and all the time spent trying to clear that stuff out. (see photos posted this morning under AnotherPatti) pg.photos.yahoo.com/ph/pattismorgellons/album?.dir=ce8a&.src=phThings seem 95% better now. Maybe even 98%. I hardly ever feel itching or movement at scalp hot spots. The anti-candida diet, the vitamins and supplements so many people have suggested here, the natural soaps and shampoos, and the discarding of curtains, furniture, carpet and the cleaning of home and laundry with hot water and ammonia and borax have all been a multi-pronged attack against this stuff. Yet, I am uneasy about all this progress. Maybe it is just a lull between cycles. I continue to do the anti-candida diet, take the supplements, and clean. But, until Spring arrives and I see how my body acts, I cannot be certain that I am truly better. Just seeing all the nose stuff photos right now in AnotherPatti's album reminded me of all the time I used to spend just peeling that stuff out. When it was the worst, I'd have to do it again within a couple of hours. It's been months since I had to do that and I don't miss it at all. Hope this reprieve in symptoms is not temporary. QH
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AKA Jess
Full Member
Sweet Disposition...Never Too Soon...Oh, Reckless Abandon...Like Noone's Watching You....
Posts: 161
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Post by AKA Jess on Jan 2, 2006 17:55:26 GMT -5
Hey QH- Glad to hear your at least getting some down time if nothing else. Hey listen, I wanted to put in my ever-famous two cents on this one. I have experienced many different phases as well in the short time I've been sick (going on 4 years). Usually, from what I can tell there seems to be waves (for lack of a better term) of several different constellations of symptoms. I hope you are in a remission of some kind, though if you are not, the next batch of symptoms will most likely be of new presentations and probably in a new spot/s of your body. The hair thing- for me has been 110% consistent in remaining problematic throughout my illness, so the fact that it's doing better for you is a good sign, no doubt! Enjoy the peace while you got it...and grow a few hairs for me, would ya?
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Post by jody on Jan 2, 2006 19:32:42 GMT -5
AKA,my scalp is by far the worst place... as of right now. but my nose & eyes r bad also. my leg is swollen bad.i guess I'm just a mess... ;D r you still using the desolvit orange cleaner,i want to get some but can not find it here where i live.is it new?
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Post by london2146 on Jan 2, 2006 19:41:54 GMT -5
Wow, that's remarkable QH! Good for you.
To those who are wondering if Clyndomycine works:: yeah, for a whole two days-that's it.
Nevertheless QH that's great. Hey I show no sighns of yeast in my body. Would you still recomend I do the candida Diet andywaY?
London
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Post by QuestionHair1 on Jan 2, 2006 19:45:30 GMT -5
AKA Jess:
I keep wanting to just get rid of it totally. I couldn't find the copper OZ water Pen mentioned in her recipe. Nor the copper sulphate type of shampoo mentioned by tamtam. So, when I saw copper tablets at the health food store a few weeks ago, I bought them. I took them for 3 days, one a day, and got dizzy and felt like something was "in" my brain or head.
My nose got runny and I blew Something big & clear out into a tissue - something Different. I had company, so I just tossed the tissue - but suddenly I was aware that there was a big space in my sinuses that I didn't know was plugged up!
Since all the talk about worms, I wondered . . .
But, then, I thought I'll try that copper powder in my hair.
I opened a couple of copper tablets and mixed it with my MSM shampoo. See . . . copper and sulphur! . . . okay, I know any chemistry person will laugh.
BUT, since shampooing with that mix, the one hot spot I have under my scalp has been "quiet" for days. No movement.
So, I'll try it again soon.
Just in case it is actually working.
I finally found the copper OZ water Pen mentioned, so I am adding that into the shelves of supplements I am rotating around.
QH
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Post by QuestionHair1 on Jan 2, 2006 19:50:23 GMT -5
Wow, that's remarkable QH! Good for you. To those who are wondering if Clyndomycine works:: yeah, for a whole two days-that's it. Nevertheless QH that's great. Hey I show no sighns of yeast in my body. Would you still recomend I do the candida Diet andywaY? London If you don't have signs, I wouldn't. Of course, I can now see my feet - no more big belly in the way. Thighs have gotten slim. Face too. I think I'm seeing a waist again. The side effects seem to be all good. For me, though, I think it made my body less of a "food source" or "fungal". I just imagine what makes a Petri dish a good growing medium, and then try to make my body opposite of that. I try to keep the body clean, dry, aired out and give it sunshine. (Although I realize the sunshine is against some protocol, so not sure about that for everyone) QH
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Post by Frisk to QH on Jan 3, 2006 0:55:19 GMT -5
I dont know this for a fact but lots of people say the copper pills are toxic and not to take them. Supposedly the colloidal copper wont build up in the system. I have felt almost cured soo many times. And so far it always comes back so just to warn you it can really fool you. But DO enjoy your good days and some people do eventually get cured after time so dont give up hope either :-*Frisk
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Post by specuelatin on Jan 3, 2006 1:19:21 GMT -5
Yes, do be careful with copper tablets. I am sure this would be a good way to get some copper, I got some chlorophyll drops, and they contain copper sulfate I noticed. I got it because the chlorophyll is suppose to be so identical to red blood cells, or something along that line, that the body is fooled, since I have the Babesiosis and that parasite attacks red blood cells, I thought I would try it. Also said something about oxygen.. it's a little dropper called ChlorOxygen, I think, but as far as copper goes, betcha it is in chlorophyll and we all can use some green. Too much chlorophyll can cause constipation. Wait a minute maybe some of us need that! jokes, jokes.. :)spec
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Post by ANTHILL on Jan 3, 2006 1:28:39 GMT -5
Copper pills made me sicker than a sick dog" I would investigate other ways to get your copper I take liquid plant derived minerals
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Post by GUEST on Jan 3, 2006 8:53:40 GMT -5
QH, Glad you are feeling bettter! I'm not trying to second guess anyone, but have to ask ......... has anyone wondered if maybe after suffering for so long your skin may be so compromised that one just doesn't FEEL some of the outward symptoms anymore?
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AKA Jess
Full Member
Sweet Disposition...Never Too Soon...Oh, Reckless Abandon...Like Noone's Watching You....
Posts: 161
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Post by AKA Jess on Jan 3, 2006 10:56:02 GMT -5
I have thought about this so many times, due to the simple fact that there are times when I can't even feel myself itching in a certain spot or something...good point!
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Post by QuestionHair1 on Jan 3, 2006 12:05:29 GMT -5
Thank you for the warning about the copper capsules I took. I only took them the 3 days (one a day) and then stopped when I noticed that my head felt like there was something in there (okay . . . no jokes!)
I think it was a couple of days later that my nose started to feel runny.
I had read on the Lyme board (not this website) that copper was absorbed by worms. So, that worried me . . . what if they just absorbed the metal and kept it in me?
On the other hand, just in case it killed them too, I did try it with the MSM shampoo and the powder of two capsules opened up.
Of course, the reason I might be feeling better now may be entirely due to this being a down cycle for this stuff.
I have been taking the Chorella Caps from Biotics Research (Mercola website)
Just for the record, here are the supplements, etc., I've been trying, but NOT all at once. I have to watch out for my liver and kidneys . . .
Earlier this year: Diflucan (or fluconazole) at 400 mg a day for several months - prescribed by doctor because I had pneumonia followed by Valley Fever. Then, down to 200 mg a day, then 100 mg 2 times a week.
Anti-candida diet - found as part of a list of suggestions by Mary's website way earlier this year. It's the main thing, and the toughest to do. I think a systemic fungal infection is a base cause in my case.
Also, because I had such bad joint pain, I stopped eating nightshade family foods. No more potatoes, tomatoes, eggplant, green pepper, etc. My shoulder, elbows, knees, etc are all fine now. Bend with ease, etc. The only sore spot left is my lower back, which the MRI showed had arthritis (actually in all the mentioned areas) - and that only hurts if I've been doing too much lifting - 110 lbs of hay bales, 50 lbs bags of bran or grain, or 40 lbs bags of dog food, etc.
Supplements I rotate around: Fish Oil, Vitamin C, Cod Liver Oil, Grape Seed Extract, B-6, Folic Acid, Icelandic Kelp, Black Walnut Hulls, Olive Leaf Extract, Cat's Claw, Zinc, Extra Strength Acidophilus, Selenium, Super B-Complex, Glucosamine plus MSM tablets 500mg each, Cittrucel, Wormwood Combination (Kroeger), Slo-Niacin, Soya Lecithin, Garlic tablets, Flaxseed Oil
Also take Colloidal Silver (Sovereign Silver brand). Take one big tablespoon of Coconut Oil 3 times a day. Also, whenever I can I drink coconut water - fresh from the coconut or cold from the refrigerator at the health food store. Whey Protein from Mercola.
Supplement I won't take anymore internally: Copper Caps
Spraying: Ammonia (hardly ever anymore, but used to do it a LOT on EVERYTHING - even computer when it was off
Laundry: HOT water for everything, one time with laundry soap and borax. One time with laundry soap and ammonia. (Because I still have cats and dogs, I have to do extra good)
Clothing: Got rid of a lot of it, but feel fine now that I have the laundry routine.
Got rid of carpets, curtains, bedding at the time of initial infection, mattress back then, cloth furniture. Sprayed new stuff and kept everything clean more often than I used to "before"
Shampoos and soaps, switched to natural stuff from health food store. Dr. Bronner's Peppermint soap and Lavender soap, which I also use to shampoo sometimes. Rotate with Tea Tree shampoo and pure MSM shampoo ($9.99 at the health food store).
That's all I remember for now.
The main effect, I believe, was to improve the immune system. Because I am so afraid to damage my liver or kidneys, I am trying a scattergun approach and only take SOME of the things I listed above at a time. To take all of the things listed above at the same time would like cause damage to my body, so I don't.
Anyway, rather than make a vague reference to the supplements I think are helping me, I decided to list them.
Some aren't listed because I finished them and threw the bottle out and will replace them later. Like, Vitamin E - can't remember the others now.
Oh yes, use Celtic Sea salt when cooking. Use salt more on food now than I used to just in case it does help get rid of parasites.
Yes, it is very likely that this is just a lull in the activity. And, I'm enjoying it while it lasts, but I won't take anything for granted and stop the supplements, etc.
QH
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Post by QuestionHair1 on Jan 3, 2006 12:11:07 GMT -5
oops - forgot the stuff in the refrigerator - flax seed oil, copper OZ water, fresh juice, organic foods, yogurt, organic apple cider vinegar, lemons for water, and coconut milk for smoothies.
QH (formerly Taco Bell, McDonalds, and junk food junkie)
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Post by jj on Jan 3, 2006 18:04:07 GMT -5
QH, Impressive list. Please consider taking milk thistle which is very important in caring for your liver. Glucosamine and MSM are excellent. I take glucosamine/condroitin combination at a higher dosage and msm at a higher dosage as well. Others familiar with these joint supplements who have increased their workout/exercise would also increase the dosage if aches or joint pain returns. ........ Ditto on the candida. Your probably aware that the nightshade vegetables are quite prevelent in most anti-candida diets. If you miss them try uping the combination above for a couple weeks and slowly add the veggies back into your diet. ...... Pulsing some of the supplements with similar attributes could be beneficial as well; like grape seed, olive leaf and silver for example. ....... Keep feeling good, Still hangin, JJ
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Post by Big Mike on Jan 3, 2006 21:42:46 GMT -5
I take most of what was mentioned most days, plus a lot of other vitamins, minerals and supplements. Daily dosage of everything amounts to about 70 pills per day.
I take Horse Chestnut extract for the leg swelling. This is what I added to my list for the leg swelling and I had good results, so I take one a day to keep my ankles down. (I think the ankles were their favorite hiding place. Unfortunately they have found another spot to annoy me.)
I have had good results with the saline nasal spray in rousting them out of my sinuses after a couple of weeks(most of the time, anyway). I also supplement this with daily sprays of colloidal silver in the nasal passages. I keep this going to keep them out (they/it does not like the salt environment).
I used a couple of drops of saline containing eye drops in each eye at bed time to get them out of my eyes. In a couple of weeks they seemed to prefer not to visit their also. I'm not putting the saline containing eye drop solution in my eyes right now because they are no longer there and I don't like putting stuff in my eyes.
I am now working on my ears and am having some level of success there also (about 90% gone). But I really don't know the outcome yet, so I won't post anything until I know it is safe. I am trying to see another Ear, Nose and Throat doctor to get them "cleaned out" again. I scared the last Harvard Graduate Doctor. (He thought the fibers were cotton even though I told and showed him what it was.) Most of my photos were from my ears, which I fell are a prime hard to clean out area. Don't try yourself. Let the doctor do this, just don't tell him anything about what you know is in there.
I use Selson Blue which contains selenium sulfide, which my one dermatologist told me to keep on my entire body for 10 minutes minimum.
There is another sulfur shampoo at Walgreens in a green bottle. I found a 2% Sulfur gel called Sulfur 8 at Walmart. It also contains menthol, which these things don't like. They make a liquid shampoo of the same name, but I don't see any sulfur content in it. This is also available at K-Mart for about 4 or 5 dollars. I also found a shampoo with 2% Sulfur content at Walgreens for about $12. I think it is called something like SEBULUX Shampoo. It says to leave on for about 5 minutes. Recall that the 2.5% Selenium Sulfide Shampoo prescription that I had was supposed to be left on for 10 minutes. I am trying both of these two new finds. I primarily use the Sebulux and Selson Blue
I am having fairly good results with another skin cleaner and same brand skin lotion for the tiny flakes, cetaphil plus one other cream. I'll add more later after I know it really works, but for those that can't wait, you can start with these safe products that were recommended to me by one of my other dermatologists.
Hope this helps,
Got to go for now.
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Post by slinker on Jan 5, 2006 0:22:43 GMT -5
To me, there is nothing more defeating than thinking I've beaten it only to have it come back with a vengeance. I've gone as long as a month with none or few symptoms, and that false sense of victory invariably seaps in. Then--oh, no...
I will say that my symptoms have gotten less severe, overall. I still have the fibers in my hair and nose, but mostly (knock on wood), my skin has been healthy. But I had an outbreak three days ago and my shoulders look like I have chicken pox. But I believe I am more or less following a healthy regimen while dealing with this.
Enzymes and hydrogen peroxide are my choice for instant relief. We take wyrmwood and bitters, sea salt, citrus fruits, vitamins that nourish the liver and immune system, collostrum which benefits the immune system as well. We take vitamins which dissolve easily in our bodies, not crud like One-A-Day or Centrum which don't dissolve and are little other than poop pellets.
Males need to keep their prostates and bladders healthy: when those fibers amass in the prostate and or bladder, it makes urination difficult and painful. I'm way too young to be having prostate issues and I've been using Nature's Sunshine Male formula which aids in prostate health. Taking this approach, I have diminished these symptoms almost to nothing--unless I forget to take my vitamins. Women may experience a similar malady as fibers build up within your vagina and cause lesions which resemble a yeast infection.
Every organ's health depends on its ability to reproduce healthy cells which replace old, dying or unhealthy ones. That process often gets impaired by outside caustic stimuli. I mean, all a tumor is is cell growth gone haywire. So what causes it to go haywire? I'm not sure I will ever be free of this damned affliction. It has changed my life negatively and I'm a cocky SOB who hates when something gets the better of me. Each symptom-free day is a blessing. Our best hope is to try and be as healthy as we are able to be. To live our lives free from fear by arming our bodies with what they need to combat the "scourge."
Chemicals aren't the answer, I feel. I don't trust pharmaceutical companies: they don't seek cures, they seek compounds which treat symptoms enough to keep the patient coming back. That philosophy permeates every single product they manufacture. The last cure was small pox--oh, but it's returned hasn't it? And polio is back, too. Big Pharm wants you to keep living so you can pay them--not get cured, or die. They treat just enough to keep you coming back. Keep that in mind. They are purely profit-driven. That's their bottom line. And they keep the FDA on a short leash so the FDA approves drugs with extremely harmful side-effects.
Yes, I sound like an conspiracy nut, but I've experienced extended periods of a symptom-free existence without pharmaceutical aid, and I want them to last. If I can share info, I will gladly.
peace
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Post by TonyM on Jan 5, 2006 1:09:00 GMT -5
I have noticed that every 3 to 4 weeks or so, there is either a rise in population and activity or barely any activity at all. I can still hear them scream at a high pitch when I scoop a bunch of them in the drain in the shower right after I wake up in the mornings, and before bed at night. They are affraid of drowning - as it shows when they freak out, HAHAHA!!!! More than one way to skin a cat heh!!! Speaking of the profit margin....what makes ya think they (pharmaceutical companies) didn't bring small pox back, just a version not as powerful and catchy as the origional, to keep the governments buying; advertising to the people as well, like other diseases. Makes ya wonder hey!?!?!....What would the people of America do if they ever found out that the AIDS virus came from a lab in the USofA....and when the scientists say "Ooops, we slipped" as for a reason why something like this was created for war, and got loose by accident. Too many supposed "accidents" if ya ask me. What's the probability of these kinds of things happening to humans that without medicinal help, would end us all like the Dinosours millions of years ago? ? Food for thought. God Bless....and learn to live with them until a cure comes about - if possible....and always be good to others'...and Pray for God's help. -TonyM
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Post by QuestionHair1 on Jan 5, 2006 9:26:51 GMT -5
Thank you for the suggestions for supplements:
I received my package of Artemisia from Organic Pharmacy, so I will be adding that to my supplements. (Has been suggested by jwf - John "Blue Skies")
AKA Jess - I've been thinking about your hair, and wondering why it isn't growing back. If I recall, you are the beautiful young lady with fine blond hair who posted the photos of chin lesions last year. I couldn't think of anything and can only hope for you that it grows back in soon. If you are like me, you are probably sick of wearing scarves and hats.
specuelatin: Thank you for the ChlorOxygen chlorophyll drops suggestion. I did find it on the internet, although there is one strange spoof site too that uses the same product name. But, the real product is on a health website too. I'll be getting that and appreciate the lead.
ANTHILL: I've started taking the Copper OZ water as suggested by Penny's recipe in the Supplement section on this website. And, those copper capsules made me feel dizzy, so I stopped right away. I'm so afraid of getting very sick and having to see a real doctor now - it's unfortunate that I've lost respect for them lately.
GUEST: The only thing I've noticed as far as not feeling the skin symptoms is on days when I'm out and about doing errands or when I'm having breakfast with a friend. I just forget about the itching when I'm having fun. It is good to be busy with other stuff. There was a period a while back when I would get an itch, start picking, and still be picking hours later - and only finding the same strange stuff over and over. Getting out and doing stuff is good. I seem to be less focused on an itch when I am busy. But for now, the itches and crawling are almost gone, gone, gone. (only a lull?)
JJ: Thank you for the reminder about Milk Thistle. That was one of the supplements I finished a few months ago and I forgot to get more. The suggestion about pulsing some of the supplements is a good one. I'd read about pulsing at the lyme websites. I'll go back to read again to figure out the number of days, if I recall correctly there was a certain period in which the stuff (organism?) could regroup, and that's when you switch to something else to beat it down by pulsing with another similar type of supplement.
Big Mike: Thank you for the suggestions. The skin products are helpful. I had these things in my ear too, and I am not certain what exactly helped clean them out. They cleared up, along with my nose, the same time I started the anti-Candida diet and started taking supplements and I was also doing a few sprays of the colloidal silver.
Slinker: I agree with your philosophy of keeping the body healthy, and especially with your views of the current pharmaceutical industry and it's bedfellow, the FDA.
TonyM: I've never heard the stuff make any noise, or seen anything in the shower - nothing seen unless I have physically removed it myself via tweezers, etc. You had mentioned in another thread that you are starting to get itchy spots on your calves. Although I have basically scalp symptoms, I did get itchy spots on my calves a few months back. I refused to scratch them. I did believe that they were caused because I had just started riding lessons again and were a result of gripping the horse the first few weeks as I tried to find my balance. I think if we get an injury, or a bruise, or some type of pressure in an area of our body that this stuff tries to take advantage of that and move in. I just focused more on the immune system and I think I beat that attempt.
QH
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Post by TonyM on Jan 7, 2006 10:02:20 GMT -5
QH,
Try this for yourself, while in the shower (tune your ears for the high sounds first - listen for it)....while in Shower (Not a bath)....after being under the water for a minute or so, take your foot and push a bunch of water towards the drain kinda fast - from say the middle or back end of the bottom of the tub - and then you might hear kinda like a high toned yelp sorta sound, almost like a scream. I hear it Every Single Morning in the shower - or any time I shower for that matter. I used to hear the same noise in the shower at the old place where we lived, man, I thought I was hearing things.....but it's there. You'll know it when you hear it - because it's a one of a kind noise - kind of sounds like a 'car with no brakes' sorta screetching noise, but not quite as loud. PLUS - make sure there's no radio on, just you and the Quiet bathroom and the water. Some showers are loud, but not really enough to cover up that noise. Most people will be affixed on the sound of the water as it hits the tub or the flow from the spout....others' can differenciate between sounds better than others. Call it an experiment.
Maybe this is the part where I'm "hearing things", but I sincerely doubt it. Maybe I could get my hands on a tone generator and figure out the frequency of which that "scream" occurs when they think they are in danger - like drowning in the shower. For the rest of you thinking I'm a nut....try it for yourself - what could it hurt.....and displace whatever disbelief prior to trying this little experiment - if you already dn't believe me, then you might not hear it.
God Bless you all....and until next time....
-TonyM
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Post by TonyM on Jan 7, 2006 10:14:19 GMT -5
OHHHH - by the way....the "itchy spots" are becoming sores now, especially on the right one, since it is spreading. The funny thing is....I didn't hurt myself at all....no bruises either. My take on this is that they think Any part is an opportune part. They do get vicious when they are stuck down by the leg areas it seems. I am and have been infested with em for years now.....but I refuse to go away or die. I take ALLOT of Vitamin C too, since they are carriers of colds and flu's this time of year. That bad ars virus everyone seems to be getting and regetting - I haven't gotten sick once since it came out and everyone started getting sick at work. I attribute this to the Vitamin C: 1000mg's a day - 500mg in the morning before I leave the house; 500mg before I go to bed at night. I get the occasional runny nose, or the occasional "wake-up slightly sore throat"....but after an hour from when I took the Vitamin C tablet.....I feel just fine. That is outside of the random iching and feelings of the critters bouncing around all over the place, HAHAHA!!!!!
-TonyM
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