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A thread to discuss lyme disease*  This thread currently has 172,153 views. Print Print Thread
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deblynn3
Monday, November 7, 2011, 3:07am Report to Moderator Report to Moderator

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Ee Dan
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Kim, you have made up your mind, you know this is the right thing for you to do, you understand that this is going to help you heal. Relax, meditate on how this is helping you, visualize how much better you will be once this is over.

All our prayers and thoughts will be only for your recovery.

Cheers to your recovery.  I like Isaiah 35:3-8


Swami, 100% me..
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ieatmeatnlikeit
Monday, November 7, 2011, 7:15am Report to Moderator Report to Moderator

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The other night I was told about a truly off the wall Lyme protocol. I'm waiting to get the details from the person but thought I'd share what I was told so far and see what folks think considering it is so off the wall but did evidently work for this person who by the way resisted doing it even though another person kept persistently advising it until they did it just to sort of stop the pestering to just do it.
Nine days of nothing but whole milk, then whole milk, cranberry, cayenne and slippery elm for a few more days. That's all I (can remember) know right now.
The milk in the gut draws all the spiroquits(?) out of the body and into the gut. The herbs kill them there and out they go. I can not imagine only milk in me for nine days but I suppose it has been done before in other cultures. The person who told me this is glad she finally listened to the pest.
I'll add more to this as soon as I know more. Last related detail: An expensive west coast homeopath sets up shop on the east coast to diagnose and render this treatment.
My personal comment: I just read every post to make sure this wasn't mentioned before because I forgot it when I first posted here a while back. I might be wrong but I didn't see any mention of INFRARED Sauna sessions. Or hyperbaric (?) chambers. Both are supposed to be ways to get started when you just can't seem to move yourself around much anymore.
iemnli


love or perish, sing or croak,recycle or regret, write or read, think or thwim.
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JJR
Monday, November 7, 2011, 3:41pm Report to Moderator Report to Moderator

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Kyosha Nim
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Might work for someone.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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JJR
Monday, November 7, 2011, 6:06pm Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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Kim, I was praying for you this morning and can't wait to hear about how it went.



My Doctor's assistant was telling me about "Earthing" today.  It's funny because she brought it up before I did.  I was meaning to ask her because of what I heard here about it.  Thanks for planting the seeds you guys!!!!!  I was curious about it when somebody on here was talking about it in a thread somewhere, and now I'm super interested. I forget what thread it was.  Huh.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Goldie
Monday, November 7, 2011, 6:55pm Report to Moderator Report to Moderator

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Sam Dan
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Quoted Text
Nine days of nothing but whole milk, then whole milk, cranberry, cayenne and slippery elm for a few more days. That's all I (can remember) know right now.


NOW if this would work, then the person would get a Nobel Prize in Medicine!..  as crazy as it sounds.. it could work.. worth a try.. worth for someone in a lab trying this on mice..

I can see how this might work.. (Possibly)  Tapeworms are interested in B12 I think if I remember correctly.. if they dont get enough then they attack the meat on the body.. If something similar might happen here what a great discovery this would be.. I mean even if one had to do it 4 times a year, it could be do-able..

Yes get more info on this .. I will hear or at least listen..    


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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ruthiegirl
Monday, November 7, 2011, 8:25pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from JJR
Kim, I was praying for you this morning and can't wait to hear about how it went.



My Doctor's assistant was telling me about "Earthing" today.  It's funny because she brought it up before I did.  I was meaning to ask her because of what I heard here about it.  Thanks for planting the seeds you guys!!!!!  I was curious about it when somebody on here was talking about it in a thread somewhere, and now I'm super interested. I forget what thread it was.  Huh.  


I hope these links work. I'm copying and pasting the results from putting the word "earthing" into the search engine on this site.

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1319746681/s-108/highlight-earthing/#num108

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1200430012/s-31/highlight-earthing/#num31

http://www.dadamo.com/cgi-bin/Blah/Blah.pl?m-1318356776/s-22/highlight-earthing/#num22

I reserved this book from my library, but I'm still waiting for my copy.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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Kim
Tuesday, November 8, 2011, 4:59pm Report to Moderator Report to Moderator

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Ee Dan
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Still in hospital with complications.  Two stones in bile duct have to come out laparoscopically down the throat.  they go through stomach into duoddenem.  doing that this afternoon.  Won't go home till tommorrow.
Am miserable.  No food since Sunday.
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TJ
Tuesday, November 8, 2011, 5:23pm Report to Moderator Report to Moderator

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Kyosha Nim
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Hang in there Kim: it will be over soon, then you can reap the benefits!
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ruthiegirl
Tuesday, November 8, 2011, 5:24pm Report to Moderator Report to Moderator

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Kyosha Nim
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Hugs Kim. I wish you a speedy recovery.


Ruth, Single Mother to 19yo   O- Leah , 18yo O- Hannah, and  12yo B+ Jack


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JJR
Tuesday, November 8, 2011, 6:31pm Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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I'm thinking and praying for you!!!!


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Chloe
Tuesday, November 8, 2011, 6:58pm Report to Moderator Report to Moderator

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Kyosha Nim
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Sending you my prayers and best wishes, Kim...{{{{{{hugs}}}}}


"The happiest people don't have the best of everything.....they know how to make the best of everything!"
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Ribbit
Tuesday, November 8, 2011, 7:10pm Report to Moderator Report to Moderator

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Kim, I'm praying for you as well.  Please keep us updated as things happen.  Are you going to be allowed to eat your own food?  I hope they don't bring you jello and junk.....

JJ, I'm sorry to hear about your ER trip.   Do you have Rescue Remedy? I'd keep it on hand if I were you and take drops when you start feeling panicky.  Also, a quick fix is Emergen-C packets.  There's one kind that doesn't have fructose in it, and we use it for times when we just feel "off" or are in the middle of an out-right, full-blown "crash".  It restores the electrolytes very quickly.  

TJ, at least you don't have to listen to loud music now.

I went off all my supplements so I'll have everything out of my system before I go see the LLMD.  I wondered how fast I'd go downhill, and it's interesting to watch symptoms pop back up one after another. What's surprising to me is the order in which the Lyme symptoms are returning.  The first thing to come back was fibromyalgia-like pain in my left arm.  It's not constant, but when it comes on, it's excruciating.  The always-present (since my paralysis episode 18 months ago) tingling in my left hand is stronger and I find myself rubbing my hands and arms to try to relieve the pain. I keep pulling on my wrists to "pop" them to relieve pressure.  The lower lip quiver has returned and if I'm lucky I might get the Bell's Palsy diagnosis as a co-infection thingy.  It's like a little muscle twitch in part of my lip.  It happens a couple of times a day--enough for me to note that it's back.  My feet and ankles are puffy in the mornings and my legs are so stiff I can't go downstairs until I walk around for a few minutes---the way I used to be every morning.  My  memory is lapsing worse and I'm beginning to avoid driving very far because I don't want to forget where I am.  It's not anything so bad as it was a year ago (getting lost even with the GPS), but before the next two weeks are up, it might get to that point again.  I'm trying to document things as they come back so I have a list of symptoms before my brain shuts off entirely.

Spring, you mentioned not being able to sew.  I love sewing, but I packed up my machine a while back because I could no longer thread the needle or remember how to wind the bobbin.  My hands would not do what I wanted them to do.  I couldn't think well enough to follow the steps putting something together.  I've been able to sew again lately, but my left hand does misbehave some.  I understand what  you're saying about looking at something you've made and not believing you actually did it.  Because of my memory loss, I will look at old artwork or read something I wrote and have no recollection of drawing/writing/sewing it.  Most of the time I'm quite honestly impressed that I did something so well.  I just wish I could remember doing it....you know?  

I pulled a box of photos out of the basement and realized we haven't had family portraits done since the baby was born---over two years ago now.  I asked nearly with tears in my eyes why we hadn't had them done.  If feel like I've missed out on two years of their lives by not having pictures done.  DH said, "Darlin' we've been busy trying to keep you going.  Plus, you didn't want pictures taken of you when you were 180 pounds." Oh yeah.  That.  I like being less than 130.  I like being less than 125.  How vain is that?

I'm living each day as it comes.  Because I can't feel the passage of time (I've never been able to), I feel like I'm stuck in this spiraling repeat of events.  I'm always caught off-guard by the mundane, and have to remind myself that if the clock says it's 5, it means I need to start supper even if I honestly feel like I just ate breakfast.  I rely on my oldest daughter sometimes to tell me what day of the week it is.  I used to call DH at work and ask him what day it was (and I don't mean the date--many people don't know the actual date, but I think most people know what day it is), but now that I've taught E to read a calendar, we keep each other in tune with what the day is.  It's helped her stay on task with daily activities (like whose day it is to feed animals, because I forget they have to eat until they start meowing/clucking/etc.) and it helps me feel time passing.  I know it's bad when I still can't figure out the day even after studying the calendar.  I'm better than I was.  At least now I can figure it out if I get confused.  There were several months a year and a half ago where I was so clueless it wasn't funny.  Now I can laugh at myself.

Unfortunately DH is beginning to show some ADD, which right now we can joke about, but it's only to stay sane.  I say, "Hey.  I'm allowed to have ADD, but you're not.  Somebody has to keep up with things."  He's got the hyperactivity part (tamed by the diet), but he's always had a good memory, and I rely on that.  I don't want to admit that he has Lyme too.  But chances are, growing up in New York as a Boy Scout.....

JJ, there's an article in this month's National Geographic about that ~5,000 year old body they dug up that has the Lyme bacteria--the one you mentioned a few weeks ago to me.  I asked DH about it and he said, "Yes, it's been around, it was just *tampered with* in Germany and on Plum Island."

I may have mentioned this before, but I can't remember.  None of the children showed signs of Lyme at birth.  On a daily basis I don't notice anything out of the ordinary (except DS's ADD and DD#2's speech delays) but I think that's because I haven't had anybody to compare them with.  We're now part of a homeschool group where I see them interact with similar-aged peers.  Oh my. My oldest can't keep up energy-wise.  She has a lot of fun, but when we get home she crashes and has to recover for at least the rest of the day.  Sometimes the whole next day.  I told her, "Don't you realize that if you were in a typical school, you'd be doing this from 8:30 a.m. to 3 p.m. and then have a couple of hours of homework on top of that?  Every single day?"  She told me she would never survive, and I agree.  She wouldn't be able to handle the work load.  As it is, we only do the "school day" with the homeschool group at most once a week.  And it's only from 10-3 or so.  I guess I'm realizing that she's not doing as well as I thought she was.  Even though socially and academically she's great, she is physically smaller and weaker than her peers.  She's almost 9 and she's smaller than some 6 year-olds I know.  My son is 6 and he can't keep up on the playground.  He seems normal until you put him with his peers, and then you see that he can't play as long or as hard and he just does not have the physical strength the others do.  And he pulls at his shirt and says he can't breathe.  I'm afraid he has Type 1 diabetes and I'm not prepared to start trying to deal with it.  My 4 year old is physically exceptionally strong and has been since birth.  She reached her milestones way early, but she's dizzy, clumsy and difficult to understand.  When we found out she was an O and not the B we thought she was, I took her off dairy and within a few weeks' time she's less dizzy, able to carry a tune singing, and she's learned a few letters.  Before, they were a total mystery to her.  Dairy is bad, bad, bad for her but we didn't know it because as a B, she was supposed to eat it...I thought.  The youngest appears to have the least problems, but she's petite and skinny.  I'd like to see her and her oldest sister gain some weight.

All that to say that I thought the children were okay until we joined this homeschool group two months ago and I started comparing them to other kids.  Now of course these other kids are high on sugar and artificial junk, and maybe that's what's keeping them going. But it's embarrassing to have to leave events early or slow down a group on a field trip because we, the health food freaks, can't walk that fast.  


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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deblynn3
Tuesday, November 8, 2011, 7:10pm Report to Moderator Report to Moderator

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Ee Dan
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{{{{hugs}}}}  I'm sending these to everyone.  


Swami, 100% me..
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TJ
Tuesday, November 8, 2011, 7:37pm Report to Moderator Report to Moderator

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Quoted from Ribbit
TJ, at least you don't have to listen to loud music now.
Yes, another silver lining.

Quoted from Ribbit
All that to say that I thought the children were okay until we joined this homeschool group two months ago and I started comparing them to other kids.  Now of course these other kids are high on sugar and artificial junk, and maybe that's what's keeping them going. But it's embarrassing to have to leave events early or slow down a group on a field trip because we, the health food freaks, can't walk that fast.  
I have a hard time selling people on BTD for the same reason.

Quoted from Ribbit
I went off all my supplements so I'll have everything out of my system before I go see the LLMD.  I wondered how fast I'd go downhill, and it's interesting to watch symptoms pop back up one after another.
I think it might be a good idea for me to do the same thing before my next visit.  It is a scary prospect...
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TJ
Tuesday, November 8, 2011, 8:36pm Report to Moderator Report to Moderator

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Kyosha Nim
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I just went through all my supplement I take regularly.  Here they are:
  • methyl B12, 2500 mcg (daily, unless I forget)
  • fish oil, 1200 mg (daily)
  • Siberian ginseng, 648 mg (daily)
  • Raw One for Men multivitamin (daily)
  • ARA Plus (daily)
  • Genoma Security (twice daily)
  • Probiotic (nightly)
  • magnesium citrate (nightly)
  • Turkey Tail mushroom, 500 mg (nightly)
  • for nitric oxide regulation, either l-arginine/l-citrulline tablet, 500 mg of each (morning)
    OR 1/2 tsp. powdered l-arginine (~1.25 g) and l-ornithine (~400 mg) mixed with juice
  • digestive enzyme supplement with lunch (most days)
In addition, I currently take 200 mg doxycycline, 10 mg Prozac, and 300 mg Lamictal.

Going forward, until I see the doctor again, I'm going to try surviving on just the Genoma Security (because it helps the antibiotic be more effective), the Turkey Tail (because it has antibacterial properties), and a probiotic (to counter the damage the antibiotic is doing to my gut flora); in addition to the medications.

The rest of the supplements are mostly there so I feel and function better.  It will be interesting to see how this works out.  In the meantime, I'm going to try moving up my doctor's appointment so I have a few days after seeing him and before going home to try to get my supplements back in me and be fit for travel.  This already seems like a scary experiment, but he needs to see how I really am!
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Ribbit
Tuesday, November 8, 2011, 11:23pm Report to Moderator Report to Moderator

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Kyosha Nim
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Quoted from TJ


I have a hard time selling people on BTD for the same reason.



Right.  [Insert whiny voice] "If the diet is so great, why do you have all these health problems?"  [Insert reasonable voice] "Well, just think how bad off I'd be without it.  You didn't know me before."  Sounds lousy.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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Ribbit
Wednesday, November 9, 2011, 12:26am Report to Moderator Report to Moderator

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Kyosha Nim
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Age: 36
In addition, my stomach hurts constantly, the nausea is only a matter of degrees, and I have ZERO appetite.  I keep forgetting to eat meals.

And I made the big mistake of eating some whipped cream last night.  It was left over from something I made it for (had a bunch of people over) and .... ugh .... Horrible.  I think Cool Whip wouldn't have made me feel this yucky.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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TJ
Wednesday, November 9, 2011, 2:32am Report to Moderator Report to Moderator

54% Nomad
Kyosha Nim
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Quoted from Ribbit
And I made the big mistake of eating some whipped cream last night.
Mmmmm, aerated fat.
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JJR
Wednesday, November 9, 2011, 3:27am Report to Moderator Report to Moderator

33% Nomad, calories calories!!!!!!
Kyosha Nim
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Wow, no wonder we all stick together so tightly and this thread has lasted so long.  We alls gots us some problems.  It sure does make it easier to have people we can vent to and that seem to understand.  TJ, that's quite a list.  But I think Leanne and I both take that much, or have at some point or another.  For 2 years I was on that much and more, and then I would do several oils every day to help too.  For some reason though, my body doesn't want the oils any more and I don't really like overdoing the supps.  Small inputs do a lot for me.  My Doctors assistant THINKS that it's my body not wanting band aids, but it wants to heal itself, and those things just overload it.  And that's how I feel.  Hopefully that is correct.  I pray that my body will start rebuilding sometime soon.  It still seems like it's in a bit of a detoxing cellular mode.  Among other things.

Leanne, if you need someone to vent to, I'm here and you can give me a ringy dingy.  I'm hoping Rob's around to get you through this though.  


The poster formerly known as "ABNOWAY"

"Finally brothers, whatever is true, whatever is honorable, whatever is just, whatever is pure, whatever is lovely, whatever is commendable, if there is any excellence, if there is anything worthy of praise, think about these things." - Phillipians 4:8
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Ribbit
Wednesday, November 9, 2011, 1:15pm Report to Moderator Report to Moderator

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Kyosha Nim
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JJ, yes, Rob's here (well, I mean not at the moment, but he's at least local).  Thank God they canceled his trip to MS for this week.  

Re: spleens.  I misunderstood where my spleen was.  After talking with JJ, I understand my back's anatomy a little better, and I see that the area where my spleen is hurts non-stop.  Especially in the early  morning hours, it will hurt quite severely and I wake up 90% of the mornings with it hurting.  Changing positions doesn't always help. If I get out of bed, sometimes it will stop instantly, but sometimes it hurts a little while longer.  My old chiropractor had thought it was intercostal muscles (between ribs).  My current chiro, when I mentioned it to him last week, said it's likely those muscles, but it could be spleen or kidney stones.  I'll ask my ND next time I see her.  It has continued to hurt this morning after I woke up and moved around.  How does one flush out one's spleen?  Or kidneys, for that matter?  Should I start another thread about that?  I have no idea where to start.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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Goldie
Wednesday, November 9, 2011, 2:16pm Report to Moderator Report to Moderator

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Sam Dan
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Ribbit.. You are a trouper!!  wow .. what a story and history.. I can see where KNOWLEDGE has made all the difference in your fear and reality.   All best wishes for you.  


Being here is invaluable, but not enough. We need ALL the Doctors. I needed them for a very small cancer spot-I could never feel!!! Please do your mammograms! Doing so saved me from cancer later on. I am grateful! Thanks for learning from my experience! I was lucky! I wish the same for YOU!
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nowishow
Wednesday, November 9, 2011, 8:16pm Report to Moderator Report to Moderator

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Red Root tincture works really well for my spleen pain. The first time I used it within an hour I felt this bubbling sensation in the spleen area. The pain decreased every day and within a week the pain was gone.  


"Anxiety is the gap between now and then"

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Ribbit
Wednesday, November 9, 2011, 8:47pm Report to Moderator Report to Moderator

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Kyosha Nim
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I just looked it up and it says Red Root is good for asthma and lymph drainage too.  Sounds like something I need.


ISTJ, BTD since 5/05.  Battling chronic Lyme disease since ~1985.

"Everything is permissible for me, but not everything is beneficial..."  I Corinthians 6:12

Family: 3 As, 1 B, 1 AB, 1 O
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nowishow
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Age: 56
About memory - I've lost so many of my memories in the last 10 years. I didn't even remember two visits from a close friend (from back east). Can't remember dates or days either. I'm so much better now, but still have trouble when my symptoms are stronger. I also have a hard time finding words and lately have started to stutter when I'm feeling really bad. That's new.

About ability - I still feel like I can do something that I can't anymore (or right now). I start trying to do a task that would have been no problem for me and I keep getting surprised that I'm unable to do it. A couple of months ago I was raking and picking up small branches in the yard and I tried to break a stick in half by putting one end into the ground and bending the other end until it broke. Well, I ended up falling flat on my face! It was the oddest thing. I've done that probably over a thousand times in my life but now my body completely forgot or was unable (maybe both).

I'm working seven hours a day now, but I still have to lie down in my office twice a day to make it through the day and I rest most of the night after I get home. I take about 3-4 times the amount of supplements on TJ's list. It's a little insane, but every time I stop one I notice - so I keep taking them. I'm going to try added some enzymes and see if it helps me absorb the supplements better. Maybe I won't have to take so many then!

I am getting better, but it's so very slow that I often wonder if I will ever get well. Or by the time I get well I'll be too old to do any of the things I used to enjoy.

One day and a time, right?  


"Anxiety is the gap between now and then"

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TJ
Wednesday, November 9, 2011, 10:33pm Report to Moderator Report to Moderator

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Kyosha Nim
Posts: 3,486
Gender: Male
Location: Midvale, UT, USA
Age: 39
Nowishow, have you looked for supps that don't have stearates or stearic acid in them?  That stuff is believed to reduce absorption.
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