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A thread to discuss lyme disease*  This thread currently has 164,084 views. Print Print Thread
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Goldie
Wednesday, October 26, 2011, 1:07pm Report to Moderator Report to Moderator

All Gatherer -70 Scorp/Sag on BTD/GENO 17 year
Sam Dan
Posts: 5,874
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Might I ask a in-delicate question?  

has anyone here ever got better then they where when they started feeling the effects of Lyme?

I am apologizing for the question, I hope that the answer will be a resounding yes, and that there are real REASONS for feeling better.. I am asking with the utmost RESPECT. Anyone not wanting to 'go there' I understand. Anyone wanting to email me, I am ok with that also.  

(In my own NON Lyme journey with health pain, it took me years to get to the place of feeling better, but that is no comparison to what you go through.  I just wish to tell you that trying all kinds of things is what fixed me.  I was not ever giving up, and eventually found what worked for me.)   together there might be a way of finding what works for each stage of this illness.  

I feel I am intruding here, but I do want to learn.  I use equipment to 'heal' others and learning from you is invaluable..I am respectfully grateful..


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, October 26, 2011, 10:40pm Report to Moderator Report to Moderator

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Well, I'm much better than I was 1 1/2 years ago, but I've still got a ways to go. I've met a lot of people (through the internet) who have gotten better so I have hope. Since I've been sick so long it's going to take a while. I'm at about 70% or so right now.


"Anxiety is the gap between now and then"

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TJ
Wednesday, October 26, 2011, 11:51pm Report to Moderator Report to Moderator

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Kyosha Nim
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It's hard to say, Goldie.  If this is Lyme, I've been living with it for a minimum of 20 years.  I've grown up with it, and I'm growing older with it (even if I don't look my age).  I don't know what it's like to be "healthy".

So I've been thinking, Lyme flares = bipolar depression.  Especially since the depression comes with a worsening of the other symptoms that could be associated with Lyme.  It's certainly not proof, but there is an internal consistency to the whole idea that's hard to ignore.

The ABx wrecked my stomach this morning.  I had to stop and eat breakfast to get some relief, and was late for work because of it.  I feel fine now, thankfully.  My prescription is for 100mg 2x daily, but in light of what I've read about doxycycline on ilads.org, I took both pills at once today (no doubt contributing to the stomach trouble).  I'll be sure to eat before taking it tomorrow.
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JJR
Thursday, October 27, 2011, 12:26am Report to Moderator Report to Moderator

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Kyosha Nim
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I just figured out I had lyme.  So.......  this has been a pretty hard year for me health wise though.  Although there were times I was worse.


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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Kim
Thursday, October 27, 2011, 11:46am Report to Moderator Report to Moderator

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The lyme doctor did not push the issue with the gallbladder but I am still not sure I shouldn't just get it out.  Biliary Diskinesia is what they call a sluggish gallbladder with no stones.  The tests are not always accurate so there could be a stone somewhere. HIDA scan was 26%, 3 years ago and two weeks ago it was 5%.  That is pretty low function.  There are days, I don't feel like eating at all.

Heredity plays a roll here.  Most of the women in my family have gotten stones and their gallbladders are out.  Losing all that weight didn't help the gallbladder function either and with Lyme, weight will continue to be an issue until I get rid of most of the infection.  That is going to take a few years.

I have all the coinfections!!  I am supposed to start the pulsing routine on the 7th of November.  Seriously considering just getting the gallbladder out before I start antibiotics.  I have had pain on and off for 8 years although not as bad at the moment.

Swami has helped that a lot but I still have low stomach acid which doesn't help.  I can't take HCL because it hurts my stomach.  My LLMD believes my gallbladder is inflamed and full of spirochetes.  Antibiotics don't seem to penetrate the gallbladder well.

I won't risk a flush because I have already heard from too many people ending up in the emergency room with a stone stuck from doing a flush.  I wish there was another test to tell me for sure the organ is diseased.  

Just call me "Crazy in VA".  I am so stressed over this.  I need to get off this fence!
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JJR
Thursday, October 27, 2011, 5:11pm Report to Moderator Report to Moderator

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Kyosha Nim
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I'm so sorry Kim.  I hate not knowing also.  I also know that it is so easy to have anxiety over it.  I've told you what I think about it and I haven't changed my mind.  I need to get my louis hayes book out and see what it says about the gall bladder.  But this I know, stressing about it, won't help it.  Try to tell yourself your gall bladder will get better.  Even if it's not working great, do you think it's harming you?  I don't think it would be.  But again, I'm not a doctor.  But maybe you should just take what the lyme doctor said and use it as a stepping stone.  Something you can nail your fears into.  Trust him.  I was just reading in Proverbs that by wise counsel we wage wars.  We are waging a war against a terrible disease.  And it is sometimes too hard for us to understand it all.  We have to give some credence to the counsel given to us by the others we trust.  I guess you just have to decide what information you are going to trust the most.  But I totally understand, it is not easy at all.  I will be praying for you.

I have a skype appointment with my doctor today.  I planned on going in, but it's an hour away, and I woke up not feeling very well and this will be the next best thing.  Hopefully I'll have some more good "wisdom" to wage this war too.

I wonder how Leanne is coming along.  I think she had an LLMD appointment this week.


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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Kim
Thursday, October 27, 2011, 6:58pm Report to Moderator Report to Moderator

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My gallbladder is harming me.  It is inflamed and likely full of spirochetes.  This is not an unusual thing to happen to someone with lyme disease.  The function has decreased in spite of my doing all the right things.  It is diseased and to keep it in is going to make it extremely difficult to get my immune system back up and running.  It will make any lyme treatment difficult.  

I do trust God, but he never promised anyone they wouldn't have to have surgery.  I am going to see the surgeon next week and hopefully this will be over by the middle of November so I can start my Lyme protocol.
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JJR
Thursday, October 27, 2011, 7:27pm Report to Moderator Report to Moderator

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Kyosha Nim
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Aaah, well it sounds like you are decided then.  Your last post made it seem like you weren't.  I'm very sorry.  I didn't mean to irritate you.  I totally understand your concern and frustration and I agree that God never promised that we wouldn't have to have surgery.  I wasn't trying to infer that.  I just thought you had said your Lyme Doctor wasn't necessarily for getting it out.  I apologize.  

My Doctor just gave me some tough love.  Hehehehe.  He told me to GET MOVING!!!!  In so many words.  Among a bunch of other things.  Right now he wants me to concentrate on probiotics with cultured veggies and supplements, more digestive enzymes and a few more things to build my body back up before I can really fight it.  But I'm still supposed to take the homeopath.


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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Lin
Thursday, October 27, 2011, 8:57pm Report to Moderator Report to Moderator

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JJ,
you mentioned in one of your messages having a day with lots of energy but then a huge storm came and you were exhausted.  The accupuncturist I go to says that wet weather bothers people with "Damp" or Yeast issues. Which I have.  This may  not be case with you but thought I'd mention this.  She recommends staying in doors on days like that and eating foods that won't feel the yeast problem.
Lin


Gluten/Casein and Yeast sensitivity.
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Kim
Thursday, October 27, 2011, 9:05pm Report to Moderator Report to Moderator

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Not irritated at all.  I needed to decide what to do today.  After hearing from many who have lyme disease  and had their gallbladder out, I decided to do get it over with.  My husband has seen me doubled over for 15 hours at a time, and he wants me to do this too.

I don't need that pain and the problem has progressed to the point of no return I think.  I can eat for a few days and then boom, I can't eat anything.  

In the time I have been on Swami, I have had lots of issues eating many of the beneficial foods.  I believe the gallbladder problem in that it isn't releasing bile for me to digest food, has been the culprit.  I can't even begin to enjoy my food list that swami has given me.  I can't take enough digestive enzymes.  

Once the infected organ is out, then I can try to feed my body the right foods.  
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JJR
Thursday, October 27, 2011, 9:29pm Report to Moderator Report to Moderator

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Quoted from Lin
JJ,
you mentioned in one of your messages having a day with lots of energy but then a huge storm came and you were exhausted.  The accupuncturist I go to says that wet weather bothers people with "Damp" or Yeast issues. Which I have.  This may  not be case with you but thought I'd mention this.  She recommends staying in doors on days like that and eating foods that won't feel the yeast problem.
Lin



Yeah, that's me and good advice.  I need some more probiotics to start getting rid of some of these bad guys.  My doctor is really pushing the cultured veggies, saying how much they can help.  And probiotics in general.  I've kind of laid off for a while, and need to get back to it.


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
Thursday, October 27, 2011, 10:30pm Report to Moderator Report to Moderator

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Quoted Text
Once the infected organ is out, then I can try to feed my body the right foods.


could you ask that they keep the gallbladder and do a biopsy to see if the spirocetes where there?  I mean I think when we take something out we ought to be told what was IN it even if nothing.

could you ask?  but be sure they don't just tell you while you are groggy __ what they did to me.. I want to KNOW..

In my case I wanted to keep my hip bone for when I needed the bone particles for a graft into my mouth.. when talked to still groggy I forgot and they gave it to others to use.. I wish I had it frozen waiting for me, now I will need other peoples bones inside my gums.. gross@!.



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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Kim
Friday, October 28, 2011, 12:17am Report to Moderator Report to Moderator

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I thought about that but I would have to get a kit from Igenex, and pay for the surgeon to save it and send it off.  

I may find out how expensive it is.  
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JJR
Friday, October 28, 2011, 12:21am Report to Moderator Report to Moderator

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Kyosha Nim
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For those of you with Lyme's, what exercises would you recommend, or tapes.  My Doctor says to do some yoga and what not.  I know this has probably been talked about before, and I have asked myself, but I would like to know from you guys that specifically are struggling with this, what seems to help you guys, or what has worked.


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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TJ
Friday, October 28, 2011, 2:02am Report to Moderator Report to Moderator

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Quoted from Kim
My LLMD believes my gallbladder is inflamed and full of spirochetes.  Antibiotics don't seem to penetrate the gallbladder well.
I keep seeing this theme.  I had my doubts, and decided to do some research.

The first problem is that some antibiotics don't make it into the bile.  There are some that do.  See page 3 of Antibiotics in the treatment of biliary infection for a table showing antibiotics that are excreted in bile at "poor", "moderate", and "good" bile-to-serum ratios.

The second problem is that antibiotics that are excreted into the bile are not as effective/active in bile as they are in serum (also from that article).

So to pull it all together, you have to (1) find an antibiotic that's effective against B. burgdorferi, (2) that is excreted into the bile, and (3) is active enough, in bile, against B. burgdorferi to have a therapeutic effect.

Quoted from Kim
After hearing from many who have lyme disease and had their gallbladder out, I decided to do get it over with.  My husband has seen me doubled over for 15 hours at a time, and he wants me to do this too.

I don't need that pain and the problem has progressed to the point of no return I think.  I can eat for a few days and then boom, I can't eat anything.
Notwithstanding the complexity, I don't think it's impossible (just really difficult) to fix a gall bladder, but it sounds like you would be doing the right thing to have it out, considering your circumstances.  Like you said, sometimes there's a point of no return.
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Goldie
Friday, October 28, 2011, 8:23pm Report to Moderator Report to Moderator

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Sam Dan
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might this be a good thing to share with you..

http://www.teleconferenceinfo.net/successfulmedicine.html  


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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TJ
Saturday, October 29, 2011, 1:53am Report to Moderator Report to Moderator

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Kyosha Nim
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The link was "404 Not Found".
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Ribbit
Saturday, October 29, 2011, 2:39pm Report to Moderator Report to Moderator

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Kyosha Nim
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Y'all, I can't even concentrate enough to read all this.  It makes me mad at myself.  

Kim, you have to get better.  If that means having surgery, for goodness' sakes, get it done!  And that's coming from someone who is very anti-surgery.  (I'm so anti-surgery that when I nearly lost all my pelvic organs with the birth of my most recent baby, I refused to have surgery to have it all put back in place even though my body was becoming more and more toxic by the day.  I'm thankful to God for online networks of people whose knowledge and experience direct us to help.)  But wouldn't you rather know you'd done all you could?  I'm also very anti-antibiotics.  But when nothing else is working and you're desperate, you take the drugs!

When I was at my worst, last summer, I couldn't take very hot showers.  I couldn't take cold showers either.  I couldn't take warm showers because they felt cold.  So I'd take a hot shower and ask DH to help me climb out of the tub and I'd be shaking all over.  When I was little (I'm like TJ--I've had it so long I hardly remember ever feeling okay), I'd do all I could to avoid being wet. Being wet made me cold, and even the knowledge that I'd be warm *in the tub* wasn't enough to get me in it, because I knew it wasn't worth the misery of being cold for a few minutes after I got out. I don't like to admit it, but I'd go long periods of time without bathing.  I was gross.  But I felt awful about myself anyway, so it really didn't make it any worse.  I became my stereotype.  My theory about this is that our thyroids are the issue with bathing.  Because our thyroids are messed up from the Lyme bacteria/viruses, our body temperature isn't properly regulated, so we become sensitive to changes either hotter or colder.  Being wet makes us cold.  Being in hot water makes us overly hot, and then cold while we dry off.  It's *extra* uncomfortable.  We are likely all Highly Sensitive People because the bacteria/viruses are also in our nervous systems.  A couple of years ago one winter I complained bitterly here on the forums about not being able to warm up.  Even though the heat was on, I couldn't get warm.  That's typically how I feel during the winter.  But someone here on the boards suggested I get a wool sweater, and I did.  It made all the difference.  Having on a snug-fitting shirt, a regular shirt and then a wool sweater, plus shoes around the house (which I didn't like to do because I prefer to go barefoot 24/7)....I stayed warmer and less miserable.  It seems to be the sudden changes that get to me.  The first "cooler" day this summer, when the temperature was 80 instead of 98 outside, I had on long jeans, socks, and a jacket.  Because it felt cold to me.  80*.  Yep, that's me.  Now that my body has adjusted, being outside with short sleeves in 60* weather is okay if I'm working.  It's the sudden changes that bother me.  Maybe my ramblings here will help somebody else.

I can't spell today.  All my words have a squiggly red line under them and I have to backspace and fix it.  My left arm hurts--the one that never stops tingling since my paralysis episode 18 months ago.  The fibromyalgia has been bothering me the last couple of days.  And Thursday I fell over a log and banged the back of my leg on something (don't ask me how I did that).  I didn't hit it very hard, but the whole muscle cramped up and it still hurts.  I couldn't find the arnica cream.  I keep hurting myself.  Although it's not as bad as it was last summer.  Remember when I sliced my wrist open on a glass jar?  The pictures are in my old thread about my ER trip.  I still have an impressive scar.  I'm thankful for my ND--I think the stuff she's got me on saved my life.

I totally get what TJ's saying about all the manic depression stuff roaring back along with all the other Lyme flare-ups.  In my own case, oddly enough, ingestion of a plant in the nightshade family brings it all back.  I could see how some people could be so sensitive to gluten or casein and maybe that causes a flare-up.  Solanine causes hallucinations in sensitive individuals and ... well ... I steer clear.  They are poisonous to me.  Thanks to Dr. D's work, I know that.  I wouldn't have ever figured it out otherwise.  If I steer clear of nightshades and if I take all my mood-boosting supplements, I don't get the manic depression.  I feel much more level-headed.  Even if I have a symptom flare-up, it doesn't affect my mind.

My appointment with Dr. Kalb is the week before Thanksgiving.  Here's something else I'm thankful for:  I'm supposed to go off all my supplements and homeopathic drops for about a week before the appointment so they don't "hide" anything from the testing.  I'm afraid of getting really bad, really fast.  My husband was supposed to be gone for that entire week (he travels some for work) and I'd be alone with four children all that time.  I really was afraid.  So Rob just told me his trip was canceled, and he's even going to take a couple of days off in preparation for our trip.  Right after the appointment, we're headed to Florida for Thanksgiving.



Ah, well, it'll do everybody good to see me really sick.  Nobody believes me.  Rob advised me to quit talking about it because nobody believes I'm sick.  I look fine, and everybody's always saying how healthy and fit I look.  

Thank you, coffee, for keeping a smile on my face till I get home to crash.


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
Saturday, October 29, 2011, 3:03pm Report to Moderator Report to Moderator

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Do y'all get frequent nose bleeds?


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
Saturday, October 29, 2011, 3:50pm Report to Moderator Report to Moderator

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I don't get nosebleeds.
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JJR
Saturday, October 29, 2011, 4:11pm Report to Moderator Report to Moderator

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No nose bleeds.  But your rambling makes me feel better, as it is a lot of the same stuff I'm dealing with.  My wife got me a wool sweater last year, that has a shaw collar and it's so snugly.  It helped me a great deal last winter.  And I wear slippers in the house all the time.  Thicker ones now, in the colder weather.  But yeah, my body doesn't regulate my temperature well at all.  I barely ever sweat, except while in bed.  

I have a feeling I know how you fell over the log.  And it might have something to do with the word "gauge" in it.  Maybe?  Hehehhehe

Part of me wants to tell me you'll be super fine without your supps.  Sometimes our bodies do well to take a break.  But, on the other hand, sometimes the right supps are really the difference between terrible and better.  But I think you'll survive, either way.  I'm SO glad Rob will be there to help you with things.  

For me, the hardest thing lately is mentally overcoming the negative feelings I have from being sick.  I'm so worried about how food is going to make me feel, I'm giving myself the wrong self talk about it.  I need to keep telling myself how good it is for me, and not the opposite. Even the good foods.  I think it's just an anxiety thing that I'm struggling with lately.  Having to do with not feeling well and being short of some kind of mineral or nutrient.  Because a lot of people with lyme's I'm talking to struggle with anxiety.  I guess.  Do you guys find that true?


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
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Kyosha Nim
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I have an idea that might help you, JJ, but it might sound less strange over the phone. *hint*

I was sitting here trying to figure out what you meant about falling over the log.  Thinking...gauge?  Like I didn't gauge where my foot was and where the log was? True, I usually have that problem. Oh, oh.  Gauge.  Ha. I get it.  No, I wasn't carrying anything or hunting anything when I tripped.


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
Saturday, October 29, 2011, 7:07pm Report to Moderator Report to Moderator

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Sam Dan
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I remember that LONG thread of last year, it was so frustrating not to be able to make sense with anything that was suggested. I am so glad you persevered.  All the best to all here.  Thanks for all the sharing.  It will help others and it makes me sorry about all my complaints over near nothing.


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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JJR
Saturday, October 29, 2011, 7:09pm Report to Moderator Report to Moderator

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Age: 42
Quoted from Ribbit
I have an idea that might help you, JJ, but it might sound less strange over the phone. *hint*

I was sitting here trying to figure out what you meant about falling over the log.  Thinking...gauge?  Like I didn't gauge where my foot was and where the log was? True, I usually have that problem. Oh, oh.  Gauge.  Ha. I get it.  No, I wasn't carrying anything or hunting anything when I tripped.



When's a good time?  This is the second time you've told me this, I should hearken the call!!!!


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
Saturday, October 29, 2011, 8:24pm Report to Moderator Report to Moderator

~W~A~R~R~I~O~R~ Defender, Survivor
Kyosha Nim
Posts: 8,156
Gender: Female
Location: Atlanta, Georgia
Age: 36
Whenever.  Although later on this evening I might be driving to the next town up to get some free arugula and beets that were posted on craigslist.


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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BTD Forums    Diet and Nutrition    The Encyclopedia/ D'Adamo Library  ›  A thread to discuss lyme disease*

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