Who has a chronic illness here?

by Charlotte Jay 39 replies
*puts hand up*

I have Lyme disease. It sucks, some days I can hardly type a word that's comprehensible or look at a video without drifting off.

So I guess my question is what methods do you have in place that help you get on with stuff. What I am doing now is not working for me
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  • Profile picture of the author LeeLee
    ^

    Some days are better than others. I try to be as productive as possible on good days so I don't have a lot of guilt on bad days.

    It took me years to learn to "do it now" and not procrastinate. It is a state of mind. A thought shift that I consciously have to remember.

    I really am enjoying working from home. It has taken a lot of pressure off me.

    I have focused on passive income and only now am moving into a more active income mode to build up a nest egg a little faster.
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    • Profile picture of the author Tina Golden
      I have several chronic conditions. Between them they interfere with my ability to concentrate, cause varying levels of pain from mild on a good day to excruciating on a bad day and cause my energy level to fluctuate just as wildly. There are other symptoms but they are less constant and less debilitating so more of an annoyance.

      Your Lyme disease should get better as your treatments go on, shouldn't they? Because that will help, of course. I don't know a lot about it but my aunt had it and I know she got better but it took rather a long time.

      My suggestion in the meantime is to leave your schedule as flexible as you can so that you can work around the worst times. Work like a demon when you're having a good day, or a good afternoon. Take the time your body needs to recover when you're having a bad day as you'll only make yourself suffer more if you try to push it too much.

      Focus only on what is most important right now and what is making you the most money. If you have to regroup and consolidate your business for now, do it. Let go or outsource the less important stuff.

      Take care of yourself! << the most important thing!
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  • Profile picture of the author seasoned
    Charlotte, as I recall, they can now generally get RID of the disease. Hopefully they DID with you.

    Tina, unfortunately, some problems cause damage that can't be fixed. I heard a story about a US senator that had to retire, because lyme disease caused irreparable damage to his heart.

    With ME, I guess the worst problem I know of is osteoarthritis. Since kimw mentioned a similar thing, I have an aortic aneurysm, mechanical valve, and artificial aortic root.

    Steve
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    • Profile picture of the author Tina Golden
      Originally Posted by seasoned View Post

      Tina, unfortunately, some problems cause damage that can't be fixed. I heard a story about a US senator that had to retire, because lyme disease caused irreparable damage to his heart.

      With ME, I guess the worst problem I know of is osteoarthritis.
      I know if Lyme disease is left long enough, it can leave permanent problems. However, the disease itself can be treated and she can get better than she is now. In the meantime, she needs to focus on her health and getting better than she is right now.

      I have arthritis, too. I was diagnosed when I was 15 so at this point, I have the joints of an 85-year old (that's what the doctor said about 5 years ago). Fun stuff, ain't it? That's the biggest reason I bought DNS 11 so that I could work even on the bad days during the winter but I can't get the dang thing to work right for me.
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      • Profile picture of the author ThomM
        Originally Posted by Tina Golden View Post

        I know if Lyme disease is left long enough, it can leave permanent problems. However, the disease itself can be treated and she can get better than she is now. In the meantime, she needs to focus on her health and getting better than she is right now.

        I have arthritis, too. I was diagnosed when I was 15 so at this point, I have the joints of an 85-year old (that's what the doctor said about 5 years ago). Fun stuff, ain't it? That's the biggest reason I bought DNS 11 so that I could work even on the bad days during the winter but I can't get the dang thing to work right for me.
        Apple Cider Vinegar Cures
        Been Arthritis (including rheumatoid) free for going on 3 years, since I started drinking ACV.
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        • Profile picture of the author Tina Golden
          Wow, that site also says it helps allergies and I have severe allergies, too.

          Thom, do you drink it in water as they suggest or just straight up spoonfuls of ACV? If there isn't a difference in effect, I'd much rather plug my nose and down a spoonful twice a day than drink it in a big glass of water.
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          • Profile picture of the author ThomM
            Originally Posted by Tina Golden View Post

            Wow, that site also says it helps allergies and I have severe allergies, too.

            Thom, do you drink it in water as they suggest or just straight up spoonfuls of ACV? If there isn't a difference in effect, I'd much rather plug my nose and down a spoonful twice a day than drink it in a big glass of water.
            Tina I drink it in water with a little Agave nectar to sweeten it.
            A friend of mine drinks it straight, a couple shots a day.
            When I was trying to cure the arthritis I drank 2T. in 16oz. water 3 times a day. Now I drink 2t. in 16oz. water as a general maintenance thing.
            What's funny (to me) is the reaction I get from most people about it.
            They are so brainwashed into thinking the doctor knows best that they won't even try it, instead relying on the drugs they are prescribed and bitching about the pain:rolleyes:
            I even had a person tell me that it didn't cure my arthritis. They said I just think I'm cured because I'm not in pain and my joints are working.
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            • Profile picture of the author Tina Golden
              They keep trying to put me on medication and I won't take it. Too many of those have turned out to have some rather nasty side effects after long term use. But I'm sure my liver isn't impressed with the amount of ibuprofen I need to take in the winter... lol.

              I'm going to give this a shot - certainly can't hurt and I'd be happy if it helped the arthritis OR the allergies.
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              • Profile picture of the author ThomM
                Originally Posted by Tina Golden View Post

                They keep trying to put me on medication and I won't take it. Too many of those have turned out to have some rather nasty side effects after long term use. But I'm sure my liver isn't impressed with the amount of ibuprofen I need to take in the winter... lol.

                I'm going to give this a shot - certainly can't hurt and I'd be happy if it helped the arthritis OR the allergies.
                If I remember right it took about two weeks before the arthritis was completely gone. That was drinking a total of 6T. a day of the vinegar.
                There where some side effects that I'm not sure where caused by drinking the vinegar. The main one is I won't drink soda anymore, tastes like crap to me. I also won't drink city water anymore (not that I was ever a fan of it to begin with). I have Three 5 gal. water jugs I fill at the spring every 3 weeks or so.
                In fact pretty much all I drink is my coffee in the morning, green tea in the afternoon, and the vinegar water all night. Even if I go out I bring my vinegar water with me
                EDIT: Forgot to add, it should be organic ACV you drink. I get the Bragg's brand at the supermarket. I'm hoping I can get an apple press built by next fall so I can make my own, seeing how I have two apple trees in the yard.
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        • Profile picture of the author Dennis Gaskill
          Originally Posted by ThomM View Post

          Apple Cider Vinegar Cures
          Been Arthritis (including rheumatoid) free for going on 3 years, since I started drinking ACV.
          It says it helps acid reflux too. I'm going to give it a try for that. Maybe I'll get lucky and it will help with tinnitus and asthma too.

          Do you mix it like that link said, about 2 teaspoons to 8 ounces of water?
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          • Profile picture of the author HeySal
            Originally Posted by Dennis Gaskill View Post

            It says it helps acid reflux too. I'm going to give it a try for that. Maybe I'll get lucky and it will help with tinnitus and asthma too.

            Do you mix it like that link said, about 2 teaspoons to 8 ounces of water?
            I don't know how Thom takes his - but I just slam down a couple of spoons like it's tequila. Can't stand the flavor in a glass of water so get it over in one fell swoop.

            Help for asthma - if I am having trouble with mine I blow a hair dryer in my face. The warm dry air helps and the heat will deflect onto your chest a little bit and loosen up those muscles. Also a lot of Vitamin C (if you can drink OJ it has a natural anti-histamine in it) and a lot of sunshine. Of course - get out of the city and stay away from as many toxins as possible. I used to carry a little vile of eucalyptus and take a whif now and again if I felt like I was starting to get tight. oh - NEVER drink milk that isn't organic, and drink it raw if you can get it. Organic at least if you can't get raw. There's something in the processed stuff that will clamp your lungs up. Not sure what it is but it's bad stuff. A lot of people with allergies and asthma don't do well with our new improved milk - maybe it's the milk flavoring they put in it because of the flavor all the crap that's in it gives it.
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            • Profile picture of the author ThomM
              Originally Posted by HeySal View Post

              Hey Thom? You double jointed? I'd like to suggest that you kiss your own shiny metal............

              Next time - YOU do the typing.
              If I could, I'd never leave the house
              Originally Posted by Dennis Gaskill View Post

              It says it helps acid reflux too. I'm going to give it a try for that. Maybe I'll get lucky and it will help with tinnitus and asthma too.

              Do you mix it like that link said, about 2 teaspoons to 8 ounces of water?
              Dennis I do it in 16oz. of water now. When I was working on the arthritis it was in 8oz.
              Keep in mind though, that's the only cold drink I drink. So I will drink between 2 to 8 a day depending on how hot it is and what I'm doing.
              Never less then two though.

              I forgot about the acid reflux. No wounder that rarely bothers me any more.
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  • Profile picture of the author KimW
    I just had a triple bypass,but that isn't a chronic disease. I also am in End Stage Renal Disease,which is chronic.
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    • Profile picture of the author ksmusselman
      I feel for all of you here!

      My chronic illnesses don't seem to be anywhere near as severe as others, however the combination put me out of work permanently about four years ago which is why I work so hard from home.

      1. Hashimoto's/Hypothyroid
      2. Major clinical depression/anxiety
      3. Degenerative joint disease (both knees)
      4. Severe sleep apnea
      5. Insomnia
      6. Asthma

      I was okay till I reached 40! I was actually diagnosed with every one of the above within three years of turning 40. Lovely huh...
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  • Profile picture of the author Charlotte Jay
    Thanks for the useful tips everyone. I have been trying to focus on my good days as much as possible and my bad days, well yeah :b

    My Lyme was caught early on, thank goodness. They have me on a couple of nasty medications that keep my body from going completely bonkers. Unfortunately, there is no cure so they have to treat the flares as they show up. It's a nasty bugger too, this disease, it hides from antibiotics, so you have to coerce it with one medication and go in for the kill with the other. It is classified as a spirochete and is in the same family as the syphilis spirochete. Nasty things, I hate this disease, ugh.
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    • Profile picture of the author Tina Golden
      I didn't realize you get ongoing flare-ups with that. I thought if caught early, they were able to get rid of it. As you can tell, I don't keep in touch with my aunt... lol.
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      • Profile picture of the author Charlotte Jay
        Originally Posted by Tina Golden View Post

        I didn't realize you get ongoing flare-ups with that. I thought if caught early, they were able to get rid of it. As you can tell, I don't keep in touch with my aunt... lol.
        There is so much misinformation and disagreement in the medical community about Lyme. Many MD's say it's all in your head and don't believe it's an illness Yeah. No. The Center for Infectious Diseases states that if you take 21 days of antibiotics then you are "cured". I say rubbish and so does my MD who has been treating Lyme for 30 years
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  • Profile picture of the author philipf
    i'v got vertigo, sometimes i can't even stand un assisted
    it's like the whole place is spinning
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    • Profile picture of the author focused
      How do you handle the vertigo?
      Do you know the cause?
      I know that for people with high blood pressure, that many of
      the medications to treat it result in a loss of balance.
      By changing the medication type, the vertigo can often be
      eliminated or lessened.
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  • Profile picture of the author seasoned
    Charlotte,

    WOW! I thought EVERYONE knew it was LEGIT now! But I still remember a story about someone talking to a relative of hers, who was a nurse in another state, and telling her the symptoms. The relative said basically "GET THE HELL OUT OF THAT STATE! THEY DON'T KNOW WHAT THEY ARE DOING! I THINK IT IS LYME DISEASE!"! But yeah, it sounds BAD! I thought they had a reasonable cure, although I had heard of some that couldn't be cured.

    Regardless though, catching it early is BEST! If you can't kill it, at least slow it down.

    Steve
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  • Profile picture of the author dners
    I would say seasonal allergies that do not stop would count as Chronic
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    • Profile picture of the author Tina Golden
      Originally Posted by dners View Post

      I would say seasonal allergies that do not stop would count as Chronic
      If they don't stop, they're not seasonal. You have allergies to other substances that are not seasonal if that is the case such as dust mites or mold. I have both seasonal and non-seasonal allergies so yes, I agree, it can definitely be a chronic condition.

      Funny how people without allergies or only minor seasonal allergies will scoff at the idea of dealing with it. Most people don't realize that allergies can lead to much worse symptoms than simply sneezing or itchy or watery eyes.
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      • Profile picture of the author MissTerraK
        Originally Posted by Tina Golden View Post

        If they don't stop, they're not seasonal. You have allergies to other substances that are not seasonal if that is the case such as dust mites or mold. I have both seasonal and non-seasonal allergies so yes, I agree, it can definitely be a chronic condition.

        Funny how people without allergies or only minor seasonal allergies will scoff at the idea of dealing with it. Most people don't realize that allergies can lead to much worse symptoms than simply sneezing or itchy or watery eyes.

        I agree wholeheartedly with you Tina!

        Just a runny nose and watery, itchy eyes...I wish!

        I have chronic allergies that will suddenly worsen and develop into allergy induced asthmatic bronchitis and often within 24 hours will intensify and become walking pneumonia.

        For some reason my sinuses drain not forward for a runny nose, but down the back of my throat and totally saturate my bronchial apparatus causing the whole mess!

        I'm sick of steroid shots, breathing treatments, inhalers, yada, yada, but if I don't utilize them, the walking pneumonia takes its hold in my lungs causing pneumonia. I know because I decided to handle it on my own as a test to see if I really needed them as the doctor insisted. I failed that test miserably, lol!

        It is a total pain in the arse!

        Terra
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        • Profile picture of the author Tina Golden
          Originally Posted by MissTerraK View Post

          I have chronic allergies that will suddenly worsen and develop into allergy induced asthmatic bronchitis and often within 24 hours will intensify and become walking pneumonia.

          For some reason my sinuses drain not forward for a runny nose, but down the back of my throat and totally saturate my bronchial apparatus causing the whole mess!

          Terra
          Been there, done that... lol. Used to have pneumonia 2-3 times per year because of allergies. By the way, all walking pneumonia means is that you don't have to be hospitalized - it's still pneumonia.

          I did discover a trick to preventing the pneumonia - well, actually 2 tricks in my case.

          First, turns out that I do not react properly to guaifenesin which is supposed to be an expectorant and loosen the congestion. Instead, guaifenesin actually tightens my congestion and will lead to pneumonia pretty much overnight. Now I do not take any cough/cold meds with guaifenesin as an ingredient.

          If you are starting out taking cough syrup or medications when you have the post-nasal drip, and then finding yourself with pneumonia, I suggest trying avoiding guaifenesin next time and instead try to focus on the antihistamine or decongestant medications and follow my next tip.

          Second, drink a TON of water whenever you get really congested or feel any sign of tightening in your chest. This will help to loosen the congestion and prevent pneumonia.
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          • Profile picture of the author MissTerraK
            Thanks Tina!

            But I don't use anything with guaifenesin because I'm allergic to it.

            I do drink a lot of fluids and doc tells me the best thing for me is bed rest, bed rest, but as hyper as I am, that's next to impossible! I do take it easy, but that's the best I can rustle up.

            I take an allergy pill every day but at times it just seems useless.

            Have you ever heard of the neti pot? Someone recently recommended that to me, but I thought it sounded like a good way to drown myself, lol!

            Terra
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  • Profile picture of the author domainarama
    I was diagnosed with Primary Progressive Multiple Sclerosis about a dozen years ago. I walk either with a cane or a walker. I have been on Soc Sec disability for most of that time period. I could work at a job, but only for maybe 3-4 hours a day, after which time my ability to concentrate goes.

    I read in a waiting room magazine at my neurologist's office last week that here are about 30 different forms of Ms. My form PPMS accounts for about 10% of the cases. The much more prevalent form of MS is called Recurring/Remitting MS. It accounts for maybe 80% of the cases. My PPMS is not as severe as RRMS, it usually isn't life threatening and in many cases it deteriorates slowly. RRMS can deteriorate much more rapidly.

    I have seen the same neurologist for about a dozen years. Last week I asked her if my condition has deteriorated faster, on schedule or slower than what she expected when she first saw me. She said I was doing better than she expected. Why?

    No one can be sure. But in all likelihood it's because I'm a gym rat. I have been going to the gym 3x/week for more than half my adult life. I have never, ever in my life been a star athlete. At best I have been slightly better at sports than the average guy. I like going to the gym, I do not have a spectacular body, am not an advertisement for muscle building, and am not close to breaking any records. I just like to do gym stuff and like to push myself a teeny bit harder most of the time. I guess most of the people in the gym are shocked when I walk slowly with a cane to the elliptical, climb onto the machine, then 'run' for a half hour at normal people speed.

    Oh, yes, another great thing about the gym is the clean towels for every shower. They do the laundry.

    The bottom line: go to the gym or walk regularly (and climb steps instead of using the elevator). Over the last dozen years it's kept me out of a wheelchair (or worse).
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  • Profile picture of the author KimW
    Third, have your doctor give you a spirometer(sp?),
    Its a device that you breathe through and actually loosens the mucus in your lungs and helps you bring it up.
    While I had been given one years ago, it was during my recovery period of my recent heart surgery that they gave me another one to clear my lungs,and it worked
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    • Profile picture of the author MissTerraK
      Originally Posted by KimW View Post

      Third, have your doctor give you a spirometer(sp?),
      Its a device that you breathe through and actually loosens the mucus in your lungs and helps you bring it up.
      While I had been given one years ago, it was during my recovery period of my recent heart surgery that they gave me another one to clear my lungs,and it worked
      Thanks Kim!

      I'm going to ask Doc about that at my next appointment!

      Terra
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  • Profile picture of the author KimW
    Terra, if I remember right,neti pots have been around the world for years,though its just the past few years thay have been finding an audience here in the states.
    Of course,that being said, they don't appeal to me at all.

    http://www.webmd.com/allergies/sinus...re-9/neti-pots
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    • Profile picture of the author MissTerraK
      Originally Posted by KimW View Post

      Terra, if I remember right,neti pots have been around the world for years,though its just the past few years thay have been finding an audience here in the states.
      Of course,that being said, they don't appeal to me at all.

      My sentiments exactly!

      Terra
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      • Profile picture of the author Tina Golden
        Just thinking about a neti pot gives me the creeps. I can't even use nasal sprays so can't imagine doing this.
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  • Profile picture of the author LeeLee
    I feel like I am drowning with the neti pot but I swear by two OTC products:
    Saline nasal sprays
    Ponaris

    These are my first line of defense and more often than not can nip a sinus event in the bud.

    I have terrible allergies but I went to an allergist for treatment some years ago and that improved me quite a bit. I also had the double whammy of badly formed sinuses so after 4 years of being on antibiotics every other month for sinus infections, I finally found a surgeon I trusted and got those sinuses fixed.

    I still have allergies but my body is better equipped now to deal with them.
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  • Profile picture of the author HeySal
    I wasn't able to control my asthma and allergies until I got the heck away from western medicine and started using natural cures. I also got rid of toxic cleaners, eat mostly organic and almost no processed foods, drink only organic milk (that one is a must), etc. Our environment is loaded with toxic crap and if you have asthma and allergies you don't need it gunking up your system.

    One of the things I do regularly is eat blood purifiers. If your blood has crap floating around in it you are going to be sick. If you can keep the crud out of your blood you will be generally healthier. Just think if you have a lot of toxic crap in your blood and then add one more thing - overload. But if your blood is clean and one thing gets in there, your body will get rid of it.

    My best general tips:
    I drink chamomile tea at night several nights a week - and take dandelion root several times a week. I prefer to get those raw, grate or chop them small then take them in a spoonful swallowing them by washing them down with water or tea. Sorry, there is no way to make them taste good. If I can't pick them I just get them from a health food shop.
    Take enzymes with pancreatin and protolytes on an empty stomach several days a week. If you eat them with food they will aid in digestion - if you eat them on an empty stomach they go straight into your bloodstream where they destroy and devour foreign proteins.

    Charlotte. A friend of my brother in law almost died of Lyme's. Doctors were making little progress and he was sick often. So he went to a natureopath and was completely cured. Didn't take too long, either.

    How I would treat lyme if I had it?

    A spoonful of sea salt 2ce daily, morning and night - for around 7 days. You can get rid of any germ, bacteria, virus by making your body deadly to that virus. Doesn't need to be a drug - anything hostile to a disease will kill it. Target the germ, not the body's reaction to it.

    Vitamin D is vital - so I'd get some sun regularly. Vitamin A - lots of salads. Also licorice root (to prevent the progression of neurological symptoms) but wouldn't take it for more than four days in a row then lay off for a few days or because it makes you retain water and can raise blood pressure and I'd eat bananas or drink citrus juice while taking it to keep my postassium levels high. And I'd be eating blood purifiers, dandelion, chamomile, red clover, enzymes every day without fail - and I'd also be hitting the ACV.

    Most importantly - since I've never heard of western medicine curing the disease but have seen natureopathy work just fine - I'd get my butt to the closest natureopath available.
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    • Profile picture of the author ThomM
      Originally Posted by HeySal View Post

      I wasn't able to control my asthma and allergies until I got the heck away from western medicine and started using natural cures. I also got rid of toxic cleaners, eat mostly organic and almost no processed foods, drink only organic milk (that one is a must), etc. Our environment is loaded with toxic crap and if you have asthma and allergies you don't need it gunking up your system.

      One of the things I do regularly is eat blood purifiers. If your blood has crap floating around in it you are going to be sick. If you can keep the crud out of your blood you will be generally healthier. Just think if you have a lot of toxic crap in your blood and then add one more thing - overload. But if your blood is clean and one thing gets in there, your body will get rid of it.

      My best general tips:
      I drink chamomile tea at night several nights a week - and take dandelion root several times a week. I prefer to get those raw, grate or chop them small then take them in a spoonful swallowing them by washing them down with water or tea. Sorry, there is no way to make them taste good. If I can't pick them I just get them from a health food shop.
      Take enzymes with pancreatin and protolytes on an empty stomach several days a week. If you eat them with food they will aid in digestion - if you eat them on an empty stomach they go straight into your bloodstream where they destroy and devour foreign proteins.

      Charlotte. A friend of my brother in law almost died of Lyme's. Doctors were making little progress and he was sick often. So he went to a natureopath and was completely cured. Didn't take too long, either.

      How I would treat lyme if I had it?

      A spoonful of sea salt 2ce daily, morning and night - for around 7 days. You can get rid of any germ, bacteria, virus by making your body deadly to that virus. Doesn't need to be a drug - anything hostile to a disease will kill it. Target the germ, not the body's reaction to it.

      Vitamin D is vital - so I'd get some sun regularly. Vitamin A - lots of salads. Also licorice root (to prevent the progression of neurological symptoms) but wouldn't take it for more than four days in a row then lay off for a few days or because it makes you retain water and can raise blood pressure and I'd eat bananas or drink citrus juice while taking it to keep my postassium levels high. And I'd be eating blood purifiers, dandelion, chamomile, red clover, enzymes every day without fail - and I'd also be hitting the ACV.

      Most importantly - since I've never heard of western medicine curing the disease but have seen natureopathy work just fine - I'd get my butt to the closest natureopath available.
      I knew if I wanted long enough, Sal would save me a bunch of typing
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  • Profile picture of the author HeySal
    Hey Thom? You double jointed? I'd like to suggest that you kiss your own shiny metal............

    Next time - YOU do the typing.
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    Sal
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  • Profile picture of the author waterotter
    This NeilMed Pharmaceuticals, Makers of Sinus Rinse, NasaFlo Netipot, Nasal Irrigation works the same as the neti pot.

    I have deviated septum and refuse the operation as they cannot guarantee any improvement, so I suffer with chronic sinus probs.

    My Dad picked me up one of these units last winter while down south. I tried it once and couldn't get past the 'drowning' sensation.

    I know people who use this one or the neti pot, and they swear by it.

    When I was a young kid, I had a bad dream - more like a nightmare where I was trapped under water. Funny how, at 50 years old, I can still remember that drowning sensation as clearly as if i were still in that nightmare.

    I love the water lol, so I just need to get over this lil phobia I have about squirting water up my nostrils.
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  • Profile picture of the author wanjugu
    Thats interesting,glad you get along.
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  • Profile picture of the author HeySal
    First off - I'd never use a blood pressure medication. If it took eating a whole head of celery a day, I'd rather. If the BP is because of fluid build up I'd eat things that are diuretic such as parsley and raspberry leaf which are both good for you. I'd also go see a natureopathic doctor about that one. There are a lot of natural ways to control BP and the medications are disastrous to health. If you are eating diuretics for it at all, natural or pharm, I suggest you start eating high potassium foods before they set your whole coronary system out of whack. Diuretics drain potassium and that's more than slightly counterproductive to bp control.
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    Sal
    New PLR - Disaster prep duo report pkg: The Art of the Graceful Bug out, and Preparing Pets for a Disaster. - PM me for report details.
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    Mind/Language - Weight, - Pet/Dog - Disaster - 2011 Earthquake Report - Hair Care

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