nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I was so diligent for so long with diet, supplements, antibiotics, herbs - the whole thing. I am so worn out,
I made up a weeks worth of supplements and I tell myself I "SHOULD" take it but either don't remember or I just don't feel like it because I don't believe it will matter.
This is especially true of herbs. I just don't want to bother with them. I don't want to believe any more. You have to believe it will help to take them and I don't.
Right now I am only taking Bactrim DS once a day. I don't feel like taking it at night because it affects my sleep. I am sick of it. If I quit it completely bart comes back. On just one a day I feel some symptoms sneaking back but I don't care.
I have spent most of my waking life for the last five years revolving around this disease. I was constantly focused on how I feel, how well I am thinking or not thinking, if I can do anything or even want to do anything. I was busy planning the next strategy for attack; studying what everyone else was doing; what was successful; what didn't work; what is new that I haven't tried - just complete obsession.
I don't want to think about it any more.
I will even try to convince myself I am well, nearly well, well enough.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Maybe exercise, detox, rest, and try to keep it off your mind as much as possible. Your body might be ASKING for a break!
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Have you tried antiparasitic herbs specifically? Would you consider doing the salt/c protocol.? Both of these things saved my life after 4yrs of abx. Just throwing some things out to you in hopes that you won't give up.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I am waiting for the PE-1 to come - hopefully next week. I also bought a contraption that makes the water alkaline.
I have 5 pounds of himalayan salt and a huge amount of vitamin C so I could try that for a change.
What is happening is unconscious. It is letting go, loosing faith and optimism in what I have been doing.
Maybe I do just need a different path!
That is why I got the PE-1, the salt, the water gadget, and transfer factor. I do not have the mental capacity to know how these things work. Maybe if they do work, that capacity will come back.
I'll try mixing some of the salt in my "magic water" to see what happens. That ought to be interesting.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
It's natural to feel frustrated. It's a frustrating disease and there are no easy solutions. Give yourself a break for a few days and see how you feel. Now I have to come along after Gail and ask...have you ever tried a Rife machine?
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
If you do try the salt/c, please go slow. I started with 1/4 tsp each salt and 1/4 tsp ester C powder with bioflavinoids in a large glass of water.
I ramped up 1/4 tsp at a time according to how I was herxing. Check out lymestrategies forum for more info. Glad to see you are willing to try another avenue.
Good Luck and keep us posted.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Don't give up!!!! It sounds like you are on the right path. We need to learn to listen to our bodies.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
I feel ya neff- I'm going into my 5th year of treatment. Serious, Dr B style treatment. I have lots of damage from the long term meds too like my gut and yeast and insomnia.
I just got past this place that you are at. What did it for me was 2 things. 1. getting off meds and realizing I was going downhill fast and was headed straight for bedbound (a nasty case of babesia).
2. Listening to the babesia talk from Dr H at the ILADS this past weekend. It gave me the strength to keep going. Also, once I started back on the meds, I'm beginning to feel much better again.
It is tough, all the while treating my toddler son and husband too. But, I don't like the alternative. I will not let this disease rule my life forever. I know it will kill me if I stop the fight. I will get to remission and I will look back on this time for valuble lessons.
Allow yourself to feel this way but then let it pass and get back to the business at hand. It also helps to have some time away from it all. take a class once a week at the loval craft store or just buy a good book to get your mind off it for some period of time.
And remember, you're not alone. All of us that have been treating so long feel exhausted and mentally spent. You're allowed to.
Posts: 1104 | From N.California | Registered: Jan 2008
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
Boy you sound just like me last week!!
Sick of being sick! Sick of being in pain! Sick of having Lyme consumes my life! Sick of pills! Sick of dripping IV! Sick of spending all our money on this disease! Sick of it all!!
After much soul searching and research I'm on a new path now and I feel so much more at peace.
Since stopping my IV antibiotics... I have just been living life. I am so busy I don't have time to eat, drink, think Lyme 24/7. What an awesome change of pace!
I encourage you to explore. Listen to your body... it really does know what it needs!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I appreciate all the replies. I took a day off the bactrim today and have no symptoms that I notice - yet.
GiGi, Thank you for the advice on how to take salt/C.
Blinkie, I shouldn't be complaining when you are taking care of a toddler and a husband, as well as yourself and have been doing this for so long.
i think my babesia is finally under control -for the time being anyway. I planned to continue taking malarone two months past the symptom free point - but I got some bad side effects. Chemical sensitivity I guess.
It isn't that the drugs don't work. They just don't get completely rid of the infections; I develop a sensitivity to the drugs and have to stop them - the infections come back. There must be another way to take care of the residue without drugs. I hope the PE-1 will do this.
lymielauren, the PE-1 is kind of similar to the rife I think.
Bestde, The first books I bought were Buhner's. I started teasal this morning with alkaline water. I also got transfer factor today which is supposed to help boost the immune system to make these things work better.
Scorpiogirl I tried muscle testing (my own way) this morning and it said teasal loud and clear. Even my husband was amazed.
I am much better than last year or even 6 months ago. I hope I don't slide backwards. It can take over so quickly. I am scheduled to get the PE-1 in about a week.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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quote:Originally posted by nefferdun: ] lymielauren, the PE-1 is kind of similar to the rife I think.
No, different technologies.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
quote:Originally posted by nefferdun: Scorpiogirl I tried muscle testing (my own way) this morning and it said teasal loud and clear. Even my husband was amazed.
How did you do that?? Do you use any tools?? I want to learn but for the life of me I can't use the biotensor!! It said no to EVERYTHING!! I don't know if knows how to say yes at all!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I cannot close my eyes, stand on one foot and lift the other foot up to my knee. I fall over almost immediately. This is an indication of how bad the connection is between my brain and my body. I can do this better with my eyes open but not at all closed.
I haven't been able to do this for a long time - since I got lyme. My balance is really off. So I use this as my test. If I can balance that is a strong Yes. Fall over completely, No. Balance better than usual but fall over, Not Right Now.
I got the idea from the friend that test me for the alkaline water gadget. She had me lift one foot off the ground, eyes open though - and then she pushed down on one of my arms. I could not really feel much difference although she swore I was stronger with her product.
Later I decided to try it myself with my eyes closed and I could really feel the difference in my ability to balance through my core - not so much her product, but the teasel root.
I also tried another method where you bend both knees slightly and hold the "thing" in one hand slightly above your head about 8 inches from your body. Then lower your arm so you pass the thing in front of you all the way to below your navel.
If it is positive your body will sway towards the thing. It it is negative your body will sway backwards away from it. If neutral , as in you don't need it right now, it will sway back and forth like a titer-toter.
You are supposed to ask first if it is a good time to test and then the opposite way if it is not a good time to test to see if you are "open" to it.
Not science but I am trying to be open minded. Both ways I get a strong yes for teasel root..
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
I honestly believe that your subconcious &/or your body has ways of letting you know when it's time to take a breather from treatment.
I took time off of ALL supplements for about 3 mos this past summer. And I don't feel I lost ground at all whatsoever. I also quit the antibiotics, too, b/c I could tell it was time for a break; have been off of them since June.
Now I am working with a very good Osteopath who put me on the Byron White Formulas, which are just as powerful as any medication out there, IMO. Focusing on detoxing as well as treating for parasites, and feeling better than I have since I relapsed two years ago.
I attribute that partially to listening to my body, and stopping the supplements along with the meds.
With time and some luck, hopefully there will be a better understanding and grasp as far as finding ways for those of us who have been in the battle for years to take a break and yet not lose ground.
I feel the Byron White Formulas are a way to do this and encourage you to look into them if you haven't done so already.
Posts: 192 | From New England | Registered: May 2011
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I have heard nothing but positive about the Byron White formulas but was told you have to buy them from a practitioner. Is this true?
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
Byron White Formulas ... 800 -203-3775 or bioresource3@prodigy
.net .........I ordered mine on the tele ... gave my LLMD's name ...
they didn't require a script or anything...
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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blinkie
Frequent Contributor (1K+ posts)
Member # 14470
posted
neff- I'm with you...I get sensative to treatment, stop, then backslide. I know mine is babs or whatever other protozoal infection it could be. I think you and I have similar symptoms from what I remember. Sounds like we're dealing with the same beast.
My husband and my son keep me going. I know I have to get well for them. If I can't get well, how can I get them well? I don't think I'd be here if I was alone.
You are allowed to be frustrated and want to give up. Just don't do it. You're so close. Keep up the fight! Keep reading those success stories...we will get there too!
Posts: 1104 | From N.California | Registered: Jan 2008
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Thanks for the number Karensky. I called one place today and could not order it so I am glad to have this number. I will try it.
blinkie, thanks again for the encouragement. I am feeling so close to well. I can't believe I am not back sliding like crazy. I have not had bactrim for two days. Just a little bit of shin burning last night.
Wouldn't it be nice if my immune system could take over or if the PE-1 could boost my immune system enough that I could get by without drugs. Sometimes when I have a little stretch of time without feeling terrible, I get carried away with optimism.
I am just taking the teasel and alkaline water right now. If I feel a lot of symptoms coming on I will take Bactrim.
My eyes were swollen every morning and one eye remained puffy all the time. I looked like I had been on a binger. I also had trouble urinating and thought my kidneys might need a break. I would like to wake up with normal looking eyes.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Lots of really good info there that could help you get over this
current "hump" and continue to get well...
hang in there... it will be worth it in the end !
-------------------- "Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero Posts: 254 | From new jersey | Registered: Jul 2009
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